Ethics and Genetic Screening News

Back to main News index

This file includes links to papers published by Eubios Ethics Institute, and some other organizations, in the first section. Next it includes topical extracts from EJAIB and EEIN between January 1994 - 2006 (older news items are in separate files). Last date of updating is referenced in the main News page. Latest news and papers is at the bottom of each of the two sections.

Abbreviations for journals

Eubios Ethics Institute home page

OECD site on rules and regulations on genetic screening
Ethical Guidelines for Analytical Research on the Human Genome/Genes (Japan, effective from 1 April, 2001)
Fundamental Principles of Research on the Human Genome (Japan)
Japanese human cloning law (effective from May 2001)
Related Papers from Eubios Ethics Institute Publications

Fujiki, N. & Macer, D.R.J., eds.,
Human Genome Research and Society (Christchurch, N.Z.: Eubios Ethics Institute 1992).
Fujiki, N. & Macer, D.R.J., eds.,
Intractable Neurological Disorders, Human Genome Research and Society (Christchurch, N.Z.: Eubios Ethics Institute 1994).
Macer, Darryl (1992)
"Japanese attitudes to genetic technology: National and international comparisons. Public and academic support for the use of government-funded genetic screening in Japan", pp. 120-137 in Human Genome Research and Society, eds., N. Fujiki & D.R.J. Macer (Christchurch: Eubios Ethics Institute, 1992).
Macer, Darryl (1994)
"Social acceptance and consequences of genetic testing in Australia and Asia", pp. 110-7 in Intractable Neurological Disorders, Human Genome Research and Society, eds., N. Fujiki & D.R.J. Macer (Christchurch: Eubios Ethics Institute, 1994).
Macer, D. & Kato Y. (1994)
"Attitudes to diseases and therapy in Japan, Asia and the Pacific", pp. 203-9 in Intractable Neurological Disorders, Human Genome Research and Society, eds., N. Fujiki & D.R.J. Macer (Christchurch: Eubios Ethics Institute, 1994).
Kaushik, V. & Macer, D. (1994)
"Public attitudes to bioethical dilemmas in Russia", pp. 210-3 in Intractable Neurological Disorders, Human Genome Research and Society, eds., N. Fujiki & D.R.J. Macer (Christchurch: Eubios Ethics Institute, 1994).
Macer, D.
High Acceptance of Genetic Screening and Gene Therapy in Japan and Australasia EEIN 3 (1993), 72-6.
Navot, O.
Nursing ethics in Israel: Dilemmas in Neonate Intensive Care EEIN 4 (1994), 4.
Iinuma, K.
Use of prenatal diagnosis for subsequent pregnancies by parents of children with Down's Syndrome EEIN 4 (1994), 4.
Leavitt, F.J.
Fetal med./surgery as alternatives to abortion EEIN 4 (1994), 45.
Preliminary Draft of ... A Universal Declaration On The Human Genome And Human Rights (UNESCO), EJAIB 6 (1996), 58.
Statement On The Principled Conduct Of Genetics Research (HUGO Code of Ethics), EJAIB 6 (1996), 59-60.
N. Fujiki, "A biography and bibliography of recent trends in bioethics and medical genetics in Japan". - 19pp. Supplement, only on Internet.
Japanese muscular dystrophy families are more accepting of fetal diagnosis than patients -Hisanobu Kaiya, Darryl Macer , EJAIB 6 (1996), 103-4.
Guidelines for Genetic Counseling and Prenatal Diagnosis (1994); Guidelines for Genetic Testing, using DNA analysis (1995) - Japan Society of Human Genetics, EJAIB 6 (1996), 137-9.
Ethics when genotype under-determines clinical phenotype - Norio Fujiki and Kozo Hashimoto , EJAIB 6 (1996), 173.
The Death of Canada's Proposed Reproductive and Genetic Technologies Act - Timothy Caulfield EJAIB 7 (1997), 108.
Genetic norms, eugenic logic and UNESCO's IBC - Melanie Rock EJAIB 7 (1997), 108-110.
Human Genetics and Ethics in China - Ole Doering EJAIB 7 (1997), 130-1.
Biomedical Ethics & Mass Screening of the Newborn in Japan - Kaede Tomoeda, Ichiro Matsuda EJAIB 8 (1998), 75-6.
Preimplantation Genetic Testing: Neither Doomsday Machine Nor Panacea For Potential Parents - Linda Hasadsri EJAIB 8 (1998), 81-2.
Eugenics and China: Where is the ethical problem?- Ole D«Þring EJAIB 8 (1998), 114.
A call for a new definition of eugenics - Yanguang Wang EJAIB 9 (1999), 73-4.
Ontology and Bioethics: the Case of Human Dignity Principle in Human Genetics - Maurizio Salvi EJAIB 8 (1998), 181-3.
Ethical Aspects in Genetics Research - Ajlan Tukun and Isik Bokesoy EJAIB 8 (1998), 178-9.
Frontier Program of Medical Gene Research in Taiwan - Yu Shi Hung EJAIB 9 (1999), 9-10.
Attitudes of MD patients and their families to DNA banks in Japan - Hisanobu Kaiya & Darryl Macer EJAIB 9 (1999), 10-12.

A 'Contract Model' for Genetic Research and Health Care for Individuals and Families - Hans-Martin Sass EJAIB 11 (Sept. 2001), 130-2.

Privacy is Dead: Commentary on Hans-Martin Sass - Frank (Yeruham) Leavitt EJAIB 11 (Sept. 2001), 132.

Ethical debate over Preimplantation Genetic Diagnosis in Japan - Yasuko Shirai EJAIB 11 (Sept. 2001), 132-136.

Genotype and Mana - K.K.Verma and Rashmi Saxena / Commentary on Verma and Saxena - Masahiro Morioka EJAIB 12 (March 2002), 64-65.

Hope and Fear in Genetics - Vijay Rajput EJAIB 12 (March 2002), 72-74.

Cloning Bibliography updated March 1997

Ethical Dilemmas in Medico-genomic Research Need Open Debate - Chandra Jeet Singh and N.S. Kavitha EJAIB 12 (July 2002), 147-149.

EJAIB 13 (2003), 57-59 Genetic health care services, present and near future in Japan - Ichiro Matsuda

EJAIB 13 (2003), 206-7 New Forms To Old Ideas: Social Darwinism and Human Research - Luzitano B. Ferreira & Henry P. Novion

EJAIB 13 (2003), 208 Commentary on Ferreira & Novion - Frank J. Leavitt

EJAIB 13 (2003), 219-221 Ethical Considerations for Tissue Typing in Order to Detect Human Leukocyte Antigen (HLA) Compatibility - Frida Simonstein
EJAIB 13 (2003), 221-3 A few considerations on ancient and modern eugenics - Sci. res. Oana Iftime
EJAIB 14 (2004), 59-61 Biological Views of the Inexistence of Human Races - Silviene F. Oliveira and Luzitano B. Ferreira Su, BQ. and Macer, DRJ. (2003), Chinese people's attitudes towards genetic diseases and children with handicaps , Law and Human Genome Review 18: 191-210.
Mandeep Kaur, Genetic Testing and Research - Ethics and LegislationsEJAIB 15 (March 2005), 42-44.
Eliane S. Azevedo, An ethical view, from developing countries, on pharmacogenomicsEJAIB 15 (March 2005), 44-46.
Luzitano Brando Ferreira, Utilization of the race concept in the medical sciences EJAIB 15 (Nov. 2005), 187-9.
Eliane S. Azevêdo, José Tavares-Neto, Black identity and registries in Brazil: a question of rights and justice EJAIB 16 (Jan. 2006), 22-25.
Luzitano Brandão Ferreira, Population genetics and the power of discrimination EJAIB 16 (Jan. 2006), 25-27.
K. K. Verma and Rashmi Saxena, Need to Redefine Sociobiology EJAIB 16 (May 2006), 76-78.
Minnie Sarah, A Christian Response to the Issue of “Designer Babies” EJAIB 16 (July 2006), 105-110.
Maitraye Basu, Are the Present Day “designer babies” a Threat to Humankind?”: Response to Minnie Sarah, EJAIB 16 (Sept. 2006), 151-2.
Archana Barua, Designing Humans, EJAIB 16 (Sept. 2006), 154-8.
Rashmi Saxena and K. K. Verma, Morality – Innate or Acquired?, EJAIB 17 (Jan. 2007), 11-14.
Luzitano Brandão Ferreira, Misconceptions of evolutionary biology and its ethical implications, EJAIB 17 (Jan. 2007), 14-16.

A further discussion of the ethical implications of the so-called gay gene between C. Venter and an actor in the play Twilight of the Golds, is in GEN (1 Oct 1993), 4, 47. An editorial in Bioethics 7(5) also looks at the controversy and whether homosexuality should be viewed as a disease or variation, and the implications for whether we view genetic determinants as "natural" or not. Another editorial on the subject is in Bioethics News 12 (5), 1-5; and a paper in G.M. Herek et al., "Avoiding heterosexist bias in psychological research", Bioethics News 12(5), supplement 2-14. A scientific afternote is in Science 262 (1993), 2063-5.

A paper looking at the relationship between individuals and society is S. Rodota, "Genetics, prediction, individual rights", IJB 4 (1994), 199-204. Papers related to the recent US Task Force report on Genetic Information and Insurance are T.H. Murray, "Genetics and Just Health Care: A Genome Task Force Report", KIEJ 3 (1993), 327-31; P.M. McCarrick, "Genetic testing and genetic screening", p. 333-54. There are positive book reviews of two recent Eubios Ethics Institute books in Bioethics 7 (1993), 453-4.

The US Institute of Medicine has released a two volume report, Assessing Genetic Risks: Implications for Health and Social Policy, reviewed in Nature 366 (1993), 103. It suggests urgent revision of genetic testing guidelines in the USA are required. They criticised the compulsory testing of neonates for some diseases, as done in Pennsylvania, Science 262 (1993), 984-5; JAMA 270 (1993), 2273-4.

The results of a survey of pediatricians in the UK regarding attitudes to newborns with severe defects is in C. Outterson, "Newborn infants with severe defects: A survey of paediatric attitudes and practices in the UK", Bioethics 7 (1993), 420-35.

The NIH has been told to reconsider the genes and crime meeting that was cancelled in 1992, Science 262 (1993), 23-4. The general subject of violence research is necessary, but needs careful guidelines, something which such meetings should be designed to consider. Reviews of Ruth Hubbard, Exploding the Gene Myth are in NEJM 329 (1993), 1662-3; Lancet 342 (1993), 540; New Scientist (23 Oct, 1993), 38. Book reviews of two biographies of Julian Huxley, a former active member of the UK Eugenics Society, are in Science 262 (1993), 1079-80; New Scientist (11 Dec, 1993), 46-7; (25 Dec), 61. Also on the history of eugenics, AJHG 53 (1993), 1367-8; New Scientist (18 Dec, 1993), 41.

The suggestion of an aggression gene from a Dutch family study is reported in Science ; New Scientist (30 Oct, 1993), 6. A comment that too much emphasis is being placed on genes and too little on nurture from the editor of Nature is Nature 366 (1993), 107.

A special issue of the JMG is on Huntington's disease (HD), which includes several papers on ethical issues and testing; U. Thies et al., "Attitudes of neurologists, psychiatrists, and psycho-therapists towards predictive testing for Huntington's disease in Germany", JMG 30 (1993),1023-7; European Community Huntington's Disease Collaborative Study Group, "Ethical and social issues in presymptomatic testing for Huntington's disease: a European Community collaborative study", JMG 30: 1028-35. In Germany the majority of specialists who responded were aware of the problems, but would generally recommend testing. The results of a world wide survey of presymptomatic testing is in JMG 30: 1020-2. Until the end of 1991 in the world 1479 persons had received completed test results, in 19 countries, with 88 centres involved. Only 5% of those at risk have been tested in the 6 centres with the longest testing program. On testing in the Netherlands and the generally good psychological outcome of receiving any test result for HD see AJMG 48 (1994), 137-44. An attitude study found that most people at risk for HD who previously turned down a test with a 95% probability of diagnosis would also turn down the gene mutation test now available, R. Babul et al., "Attitudes toward direct predictive testing for the Huntington Disease gene. Relevance for other Adult-Onset disorders", JAMA 270 (1993), 2321-5. The difficulties that the spouse faces in HD are discussed in AJMG 48 (1994), 145-50.

A general comment on genetic prediction and late onset diseases is in Newsweek (6 Dec 1993),56-7; Science 262 (1993), 48-9; Nature 366 (1993), 502. The issues of Fragile X screening are raised in New Scientist (25 Dec, 1993), 10-11; see also on the technical methods, Lancet 342 (1993), 1025-6. In general not many people have taken advantage of gene testing so far, New Scientist (18 Sept, 1993), 6.

A review of general interest for successful population wide genetic counseling is M. Kaback et al., "Tay-Sachs disease - carrier screening, prenatal diagnosis, and the molecular era. An International perspective, 1970 to 1993", JAMA 270 (1993), 2307-15. A survey looking at the involvement of rabbis in genetic counseling in New York found that half discussed health issues in normal premarital counseling and 22% had counseled a couple after diagnosis of an abnormal fetus, AJHG 53 (1993), 1359-65. A survey of prenatal diagnosis and sex selection, with the data that previously was published in their book from 1987, is D.C. Wertz & J.C. Fletcher, "Prenatal diagnosis and sex selection in 19 nations", SSM 37 (1993), 1359-66.

The topic of privacy is reviewed in G.J. Annas, "Privacy rules for DNA databanks. protecting coded 'future diaries'", JAMA 270 (1993), 2346-50. He proposes four rules to govern the creation of databanks. The report from the Nuffield Council for Bioethics in the UK on genetic screening says that persons should not be expected to divulge information to insurance companies unless it relates to a known family condition, or unless they are asking for an unusually large amount; Nature 366 (1993), 498; New Scientist (16 Oct, 1993), 47; (11 Dec 1993), 3, 9. The problems of computerised medical records and privacy are raised in Biotechnology 11 (Nov/Dec 1993); New Scientist (11 Dec, 1993), 25-7; BMJ 307 (1993), 1227-8; also see L. O. Gostin et al., "Privacy and security of personal information in a new health care system", JAMA 270 (1993), 2487-93. Model consent forms for DNA linkage analysis are in AJMG 47 (1994), 1223-4.

There have been two recent reports on genetics screening presented in Europe, The Nuffield Council report was mentioned in the past issue (copies available for Ž£6 from the Nuffield Council on Bioethics, 28 Bedford Square, London WC1B 3EG, U.K. The four important features of that report according to the chairman were: the difficulty in assessing individual health risks exposed by genetic screening; The increased complexity of the ethical aspects of confidentiality; The demands made upon professional and health resources by the required ethical procedures; and the broad framework provided as a safeguard against potential eugenic abuse. See a comment in BME (Dec 93), 3-4, 8-10. Another report was to the Commission of the European Communities by R. Chadwick et al., Ethical implications of human genome analysis for clinical practice in medical genetics with special reference to genetic counseling (Cardiff: Centre for Applied Ethics 1993). One of their key conclusions is that counselors should take into account the wide range of risk perceptions that different people have, and another is that confidentiality should be respected. That research group is continuing research on future impacts.

The development of ethical guidelines for genetic screening is reviewed in B.S. Wilfond & K. Nolan, "National policy development for the clinical application of genetic diagnostic technologies. Lessons from cystic fibrosis", JAMA 270 (1993), 2948-54. They also make a call for an independent ELSI commission to examine the human genome project. They compare principles of genetic screening from several reports, focusing on the Hastings Center, National Academy of Sciences, and President's Commission. Prenatal screening for CF is also discussed in Lancet 343 (1994), 172. The dilemmas posed by another genetic disease are debated in E.A. Wulsberg et al., "Alpha-1-antitrypsin deficiency. Impact of genetic discovery on medicine and society", JAMA 271 (1994), 217-22. They found their was still a shortage of information and general unfamiliarity with this disease among society.

A discussion of predictive medicine and Huntington's disease is French is G. Terrenoire, "M»Åecine pr»Åictive, l'»-reuve de l'exp»"ience: d»-istage pr»'ymptomatique de la maladie de Huntington", Sciences Sociales et Sant</I XI (1993), 99-121. A letter on the subject is AJMG 49 (1994), 355-6. A review of D.A. Pollen, Hannah's Heirs: The Quest for the Genetic Origins of Alzheimer's Disease (New York: Oxford University Press, 1993, 296pp, US$25) is in AJHG 54 (1994), 114-5. The history of that research is not always ethical, as seen in the paper by R. Cook-Deegan in the new book from Eubios Ethics Institute, from the Fukui Seminar. Other papers on genetic screening and ethics include KIEJ 3 (Sept 93), 333-54.

An opinion from the French National Ethical Consultative Committee for the Life and Health Sciences on trisomy 21 screening is in IDHL 44 (1993), 754. They do not approve a general public health programme, but support a programme for further refinement of techniques for screening, and stipulate conditions for the general use of blood testing.

There has been general condemnation of China for their announced plans to introduce a eugenic law to prevent "inferior births" by banning the marriage of persons with inheritable serious diseases, including hepatitis, venereal disease and mental disease; Nature 367 (1994), 1-2, 3. A general paper looking at eugenic concerns is K.L. Garver & B. Garver, "The human genome project and eugenic concerns", AJHG 54 (1994), 148-58, 120. Book reviews of interest are Nature 367 (1994), 29; SSM 38 (1994), 395; and comments on S. Spielberg's latest movie, "Schindler's List", are in Newsweek (17 Jan 1994). The experiences of disabled people are discussed in J. Susman, "Disability, stigma and deviance", SSM 38 (1994), 15-22. Education of ethics using a case-orientated approach is called for in L.S. Parker, "Bioethics for human geneticists: Models for reasoning and methods for teaching", AJHG 54 (1994), 137-47.

The second edition of Dorothy Nelkin & Laurence Tancredi, Dangerous Diagnostics. The Social Power of Biological Information (US$12.95, University of Chicago Press, 0-226-57129-7) has been released. A general review of the dilemmas of genetic screening by D. Nelkin is in NY Times (4 Feb). A discussion of Fragile X testing in schools by Paul Billings & Ruth Hubbard is in geneWATCH 9 (1994), 1-3. It asks who benefits, and discusses school testing programs tried in Colorado and Georgia. The funding comes from a company that hopes to market test kits in the future.

The US NIH advisory committee on human genome research has warned against making cancer gene presymptomatic screening widespread too soon, JAMA 271 (1994), 785; Nature 368 (1994), 88. A review of three genetic testing reports by L.S. Rothenburg is in Biotechnology 12 (1994), 354-5. Letters on insurance and testing are in BMJ 308 (1994), 472-3.

A review of the US ELSI studies on cystic fibrosis testing is in Human Genome News 5 (January), 1-2. The studies have tested 2821 individuals, 64 were found to be carriers. Four couples with a 1 in 4 risk of an affected child, found one affected child, and 3 carriers. The psychological data has yet to be analysed. The cost estimates indicate that the total cost (including education and follow-up) would be about US$400,000 for 3500 individuals in which 1 fetus with CF will be identified. Given that not all couples would seek an abortion of an affected couple, these studies suggest that the testing is not especially cheap. Huntington's disease gene screening issues are discussed in NZ Med. J. 107: 30-1.

In Ohio state in the USA, a bill prohibiting genetic discrimination (Bill 71) has been signed into law since Oct 25, 1993; geneWATCH 9 (1994), 8. The bill was made softer by narrowing the definition of genetic information to laboratory tests of genes and chromosomes, but it allows discrimination by insurers or others on tests based on gene products. Thus, it may not be very effective as many tests use gene products, and one can expect more to do so.

The studies which lead to the paper of Hamer et al. (1993) reporting a homosexual gene marker with Xq28, have been extended and support the first paper. However, Hamer has said it would be an abuse to start screening for that marker, New Scientist (5 March 1994), 9. Book reviews on genetic counseling are SSM 38 (1994), 1473-4; Lancet 343 (1994), 405. Letters on the implications of sex selection are in BMJ 308 (1994), 536; Lancet 343 (1994), 55-6.

The use of drugs to design personality is discussed in New Scientist (12 March 1994), 22-6; BMJ 308 (1994), 665. It is dangerous in itself, and as a precedent for genetic methods. Eugenics and the politics of normalcy is discussed in The Ecologist 23 (1993), 185-91; and learning difficulties in BMJ 308 (1994), 664-5, 805. General issues of genetics for social scientists are discussed in Sociol. Health & Illness 15 (1993), 567-86. On research trying to say the Holocaust never happened, see Nature 368 (1994), 483.

Two new books with the word frontier in them are: M.S. Frankel & A.H. Teich, eds., The Genetic Frontier: Ethics, Law and Policy, AAAS 1994, US$23 (+$4 post); J.R. Nelson, On the Frontiers of Genetics & Religion, WM.B. EErdmans Publishing Co., Grand Rapids, Michigan, 1994, US$13 (+$2 post) (Fax 1-616-459-6540). Prof. Nelson organised two major conferences on genetics and religion, and these are the conclusions of those meetings. A new novel which looks at the problems of amniocentesis and prenatal diagnosis is Shelby Yastrow, Under Oath, Diamond Books, New York, 1994, 340pp., US$5.50.

The question of generic consent, the general consent of a population for population screening, is debated in NEJM 330 (1994), 1611-3. As I have said in past books, the consent of the population is not sort for the genome project, it is just too bad if some people don't want to know that our lifespan is genetically programmed (the general presymptomatic fact, we all generally guess when we see death). A general review of ethical issues is J. Rennie, "Grading the gene tests", Scientific American (June 1995), 88-97. An UK study of people's thing is H. Bekker et al., "The impact of population based screening for carriers of cystic fibrosis", JMG 31 (1994), 364-8.

A new newsletter called Euroscreen (4 page first issue in spring 1994) is being circulated from the EC group working on genetic counseling. Contact Prof. Ruth Chadwick, Euroscreen, Centre for Professional Ethics, University of Central Lancashire, Preston PR1 2HE, U.K. They are currently involved in 3 projects: childhood testing for adult genetic diseases; concepts of health and disease; and historical precedents and anthropological approaches. A general discussion of the ethical issues of genetic screening is New Scientist (14 May 1994), 14-5. Another European report is L. Nielson & S. Nespor, Genetic Test, Screening and Use of Genetic Data by Public Authorities in Criminal Justice, Social Security and Alein and Foreigners Acts, The Danish Center for Human Rights (38 Studiestraede, 2nd Floor, DK-1455 Copenhagen K, Denmark), 1994, 70pp. It compares the situation in Denmark and Italy over these issues, and debates possible approaches to protect privacy. A response to the Nuffield Report on gene screening by Angus Clarke is BME (April), 13-21.

A special issue of Science 246 (17 June 1994), 1647, 1686-1739 includes several review papers on genes and behaviour; including papers on animal models and, R. Plomin et al., "The genetic basis of complex human behaviors", Science 264 (1994), 1733-9. A review of the genetic basis of homosexuality is in Scientific American (May 1995), 43; with the paper written by S. Levay & D.H. Hamer, "Evidence for a biological influence in male homosexuality", Scientific American (May 1995), 44-55. A German scientist who was involved with the genes and violence study (Science 262 (22 Oct, 1993): 578) was recently attacked by several critics, Science 264 (1994), 653. Also on violence in family histories, AJPH 84 (1994), 618-22. A book review is BMJ 308 (1994), 1176.

Racial differences in heart disease are discussed in BMJ 308 (1994), 1011-4; and on harder veins in black Americans, Associated Press (26 June) reports a paper from the International Interdisciplinary Conference on Hypertension in Blacks.

A letter making ethical attack on a termination of an XX fetus is Lancet 343 (1994), 1164-5. On eugenics see The Ecologist 24: 42-3; Lancet 343 (1994), 865-6 (on the drug fluoxetine), 1167; Science 264 (1994), 1015-7; and on the proposed law in China, Time (2 May), 44-5. On consanguineous marriage among Asian immigrants in Europe, BMJ 308 (1994), 980. Different perspectives on coping with disability depending on social background are in SSM 38 (1994), 1491-8.

A review of the genocide among North American Indians in earlier times is Nature 371 (1994), 14-5. Comments on the new Chinese eugenics plans are in Hospital Ethics (May), 14-5. See also JAMA 272 (1994), 406-7; Science 265 (1994), 124-5. On race relationships, AJPH 84 (1994), 892-3, 938-44, 951-6, 957-64, 971-6; BMJ 309 (1994), 67, 286-7. HTLV-1 testing in Australian aboriginals is debated in MJA 160 (1994), 461-2. On Aldous Huxley, Nature 370 (1994), 337.

A recent book with a collection of papers on the subject in French is Marcel J. Melancon, ed., Bioethique et genetique. Une reflexion collective. JCL editions (930 Jacques-Cartier Est, Chicoutimi, Quebec G7H 2A9, CANADA), 1994, 150pp. A series of short papers on ethics and genetics are in the National Council on Bioethics in Human Research (Canada) Communique 5(1), 1-6.

A debate over the benefits and risks of genetic screening is in Science 265 (1994), 464-7. A critique of screening is D. Shickle & R. Chadwick, "The ethics of screening: Is 'screeningitis' and incurable disease?", JME 20 (1994), 12-8; M. Sandelowski, "Separate, but less equal: fetal ultrasonography and the transformation of expectant mother/fatherhood", Gender & Society 8: 230-43. A comment on the Nuffield Report is in JME 20 (1994), 67-8. A copy of the report issued by a Committee of the Health Council of the Netherlands on genetic testing and therapy is in HGT 5: 37-40. Letters on screening for cystic fibrosis are in BMJ 308 (1994), 1459-68; 309: 339-40.

For late onset diseases a model is "Guidelines for the molecular genetics predictive test in Huntington's disease", JMG 31 (1994), 555-9. These are the revised guidelines of the world group following the gene discovery. On predictive testing for breast and ovarian cancer, Lancet 344 (1994), 197. Wilson's disease screening is more compelled in the sense that copper accumulation may be prevented if diagnosed early, it is discussed in Lancet 343 (1994), 1637-8.

India has finally passed a law banning sex selection, and imposing up to 3 years in jail as a punishment for women or doctors; Nature 370 (1994), 320. A report on the NIH-DOE Joint Working Group on ELSI meeting held in 21-22 April, is Human Genome News (July), 10. The Americans with Disabilities Act and sexual exclusions under it, is discussed in Columbia Law Rev. 94: 1451-93. Sterilisation is being legalised in Brazil, Lancet 344 (1994), 325.

A discussion of the ethics of behavioural genetics is in Science 264 (1994), 1686-9; and on the environment/gene balance, Science 264 (1994), 1700-1. Alcoholism research and the D2 receptor is reviewed in Science 264 (1994), 1696-7. The tendency for human beings to cheat on sexual partners is presented as animal behaviour in Time (15 Aug 1994), 34-42. On violence research, Science 265 (1994), 171; Lancet 343 (1994), 1491.

Papers on "genetic engineering and humaneness" are in HGT 5 (1994), 745-60. It includes theological perspectives, see also D.G. Jones, "Manipulating human life: The ambiguous interface between science and theology", Colloquium 26: 17-31.

A paper looking at views of subjects at risk of having a child with muscular dystrophy or cystic fibrosis is Rona, R.J. et al., "The influence of genetic counseling in the era of DNA testing on knowledge, reproductive intentions and psychological well-being", Clin. Genet. 46 (1994), 198-204. Most of the persons in the UK survey said they would use genetic counseling. Another paper finding moderate interest in counseling is Nance, M.A. et al. "Knowledge of genetics and attitudes toward genetic testing in two hereditary ataxia (SCA 1) kindreds", AJMG 54 (1994), 242-8. A review of Clarke, A. Genetic Counselling: Practice and Principles (Routledge, £±4, 266pp.) is in BMJ 309 (1994), 419. A discussion of the emotional adjustment to know diabetes is O&G 84 (1994), 329-34.

A US study finding 24% uptake of cystic fibrosis testing in a single visit invitation compared to 4% uptake when counseling was a prerequisite is Tambor, E.S. et al. "Offering cystic fibrosis carrier screening to an HMO population: Factors associated with utilization", AJHG 55 (1995), 626-37. Results from Denmark are in Koch, L. & Stemerding, D. "The sociology of entrenchment: A cystic fibrosis test for everyone?", SSM 39 (1994), 1211-20. A US study suggesting economic factors are the most important criteria of choice of obstetric provider, Dobie, S.A. et al. "Do women choose their obstetric providers based on risks at entry into prenatal care? A study of women in Washington state", O&G 84 (1994), 557-64. A study of the ACOG guidelines on prenatal practice reports uncertainty in whether the guidelines changed provider practice, AJOG 84 (1994), 549-56.

Several papers on predictive testing include: Kessler, S. "Predictive testing for Huntington disease: A psychologist's view", AJMG 54 (1994), 161-6; Motulsky, A.G. "Predictive genetic diagnosis", AJHG 55 (1995), 603-5; Codori, A.-M. "Self-selection in predictive testing for Huntington's disease", AJMG 54 (1994), 167-73; Codori, A.M. & Brandt, J. "Psychological cost and benefits of predictive testing for Huntington's disease", AJMG 54 (1994), 174-84, present Baltimore results; van der Steenstraten, I.M. et al., "Predictive testing for Huntington disease: Nonparticipants compared with participants in the Dutch program", AJHG 55 (1995), 618-25, found that those who refused the test had a more pessimistic attitude, and had been told of their risk for the disease earlier (average 15.6 years) compared to those who joined the testing (22.6 years). The question of children's consent to testing is debated in Wertz, D.C. et al., "Genetic testing for children and adolescents. Who decides?", JAMA 272 (1994), 875-81. Also Hollaway, S. et al. "Predictive testing for Huntington disease: social characteristics and knowledge of applicants, attitudes to the test procedure and decisions made after testing", Clin. Genet. 46: 175-80, presents the UK results; and from Canada, Benjamin, C.M. et al., "Proceed with care: Direct predictive testing for Huntington disease", AJHG 55 (1995), 606-17. In general the individuals tested had positive results after knowledge of the genetic risk they had. A letter on the tests is AJMG 52 (1995), 118-9.

A review and estimate of the affect of consanguinity is Bittles, A.H. & Neel, J.V. "The costs of human inbreeding and their implications for variations at the DNA level", Nature Genetics 8 (1994), 117-21; Nature 371 (1994), 630. Their study of first cousin marriages finds a 4.4% average depression of survival at 10 years, and they calculate that the average human is heterozygous for only 1.4 lethal equivalents capable of acting over this portion of life cycle. This suggests that most of the human variation has no impact on survival. However, it would be good to know the life time effect. Others have suggested 5-15 lethal heterozygous genes, which is much higher.

A new book looking especially at genetic technology from the perspective of handicapped persons is Just technology? From Principles to Practice in Bio-ethical Issues, An Issue Paper of the International league of Societies for Persons with Mental handicap, Galeries de la Toison d'Or, 29 Chaussee d'Ixelles, Box 393-31, B 1050 Brussels, Belgium, 180pp.C$24. In addition to general principles it has 3 working papers, on prenatal diagnosis, withholding treatment and reproductive technology. It is useful to get a different perspective on the issues, and the League made several statements to the UNESCO Bioethics Committee (see Editorial).

The ethical issues involved in marketing of genetic tests without counseling are debated in L. Rothenberg, "Diagnostic and predictive testing without counseling - is it ethical", GEN (15 Sept 1994), 35. Letters on testing are in Science 265 (1994), 1509-10.

A paper looking at embryo status and genetic selection is Clarke, J. "The meaning of menstruation in the elimination of abnormal embryos", Human Reproduction 9 (1994), 1204+. A call for discussion is Pergament, E. & Bonnicksen, A. "Preimplantation genetics: case for prospective action", AJMG 52 (1995), 151-7.

Book reviews of Murray, C. & Herrnstein, R. The Bell Curve: Intelligence and Class Structure in American Life (The Free Press, 845pp.) are in Time (31 Oct), 50-1; Nature 371 (1994), 637; Morganson, T. "IQ, is it destiny?", Newsweek (24 Oct), 27-33. This book reports racial differences in IQ, and makes several eugenic suggestions, such as connecting welfare to IQ, and restricting welfare to those with lower IQ. These type of comments will make the book a hot topic in the coming months, and it is of interest (or concern) to many readers. It will continue the nature/nurture debate over IQ, and race. Intelligence is also discussed in The Sciences (Nov/Dec 1994), 14-6. A description of the race laws in the US and the collection of data is JAMA 272 (1994), 761. On genocide, BMJ 309 (1994), 614-5.

A paper reporting an aggression gene in mice is Saudou, F. et al. "Enhanced aggressive behavior in mice lacking 5-HT1B receptor", Science 265 (1994), 1875-8. On sexuality and genes; Comings, D.E. "Role of genetic factors in human sexual behavior based on studies of Tourete syndrome and ADHD probands and their relatives", AJMG 54 (1994), 227-41; and on homosexuality in general, NEJM 331 (1994), 923-30. A review is Rutter, M. "Psychiatric genetics: Research challenges and pathways forward", AJMG 54 (1994), 185-98. Mental disease is discussed in Scientific American (Sept 1995), 17-8; J. Health & Sexual Behavior 35: 179-91. Book reviews on the subjects of longevity are in Biotechnology 12 (1994), 1024.

On October 27, 1994, the Chinese "Maternal and Infant Health Law" was passed, which among other things requires physicians to recommend to couples that they should postpone their marriage if either one is found to have an infectious, contagious or an active mental disorder; Reproductive Freedom News (2 Dec 1994), 6-7; BMJ 309: 1319; Lancet 344 (1994), 1355. The International Genetics Federation may withdraw its plans to hold the 1998 International Congress of Genetics in Beijing, Nature 372 (1995), 123. The changes to the family planning laws of one of China's provinces, Shaanxi, are noted in IDHL 45 (1994), 323-4. In Lebanon, a November15 law also requires pre-marital examination of couples, and could also be described as a eugenic law, Lancet 344 (1994), 1426.

Sex selection and the effect on population structure is discussed in Nature 372 (1995), 503-4; Theoretical Population Biology 43: 249-78; Booth B.E. et al. "Fetal sex determination in infants in Punjab, India: correlations and implications", BMJ 309 (1994), 1259- 61. It is also suggested that the reason that more males are born then females in the absence of intervention may be because of generations of past female infanticide. India is considering a law to improve the lives of disabled persons, BMJ 309 (1994), 1037-8.

In the UK it is possible to do cystic fibrosis screening by post with University Diagnostics Ltd; BME 103 (Nov 1994), 5-6. The cost is £¹5. It relies on telephone counseling. A UK government committee is looking at the impact of genetic research (to add to the Nuffield Council's reports?), and a list of the questions it advertised for responses is BME 102 (Oct 1994), 6-7. The emotional costs of knowing that one carries the BRCA1 gene and has an 85% risk of breast or ovarian cancer, or both, mean counseling is urgently needed before tests become common, New Scientist (24 Sept 1994), 3. On the dilemmas of tests, Vines, G. "Gene tests: The parents' dilemma", New Scientist (12 Nov 1994), 40-4; Lancet 344 (1994), 1151-2. Several NIH grants from the Human Genome Project are being spent on developing genetic testing policy and procedures for those at cancer risk, Human Genome News (Nov), 15. The Statement of the American Society of Human Genetics on Genetic Testing for Breast and Ovarian Cancer Predisposition", is in AJHG 55 (1995), i-iv; and a paper is Rowell, S. et al. "Inherited predisposition to breast and ovarian cancer", AJHG 55 (1995), 861-5. An English version of the Swiss Academy of Medical Science medical ethics guidelines on genetic investigations are in IDHL 45 (1994), 387-91.

A cost analysis finding that the general CF screening would not be better unless we judge the emotional benefits is Lieu, T.A. et al. "The cost-effectiveness of prenatal carrier screening for cystic fibrosis", O&G 84 (1994), 903-12. The attitudes of persons with cystic fibrosis is discussed in Sharp, C. et al. "Young adults with cystic fibrosis - social well-being and attitudes", Aust. Nursing J. 2 (1994), 38- 40. Screening carriers for CF is best before pregnancy, BMJ 309 (1994), 1428-30. A discussion of parental environment also relevant to genetics is Steinbock, B. & McClamrock, "When is birth unfair to the child?", HCR 24(6), 15-21.

The emotional costs of chorion villi sampling (CVS) due to spontaneous abortion being higher (especially as it is done earlier in pregnancy which already has an increased rate), are discussed in Boss, J.A. "First trimester prenatal diagnosis: earlier is not necessarily better", JME 20 (1994), 146-51. On the dilemmas of triple testing for serum markers of fetal disease, Wagner, A.F. & Wagner, A.M. "The triple screen in prenatal care: Not just a simple blood test", Trends in Health Care, Law & Ethics 9: 33-8; BMJ 309 (1994), 1372- 3. Differences in counseling in the UK are found in Marteau, T. et al. "Counselling following diagnosis of a fetal abnormality: the differing approaches of obstetricians, clinical geneticists, and genetic nurses", JMG 31 (1994), 864-7.

The report arguing against the general child testing for adult onset diseases in the UK is Report of a Working Party of the Clinical Genetics Society (UK), Chairman: Dr Angus Clarke, "The genetic testing of children", JMG 31 (1994), 785-97, 784. Policy over screening programmes is discussed in NEJM 331 (1994), 1024-5, 1461; Lancet 344 (1994), 1090-1. Huntington's disease testing in Australia is reported and discussed in MJA 161 (1994), 350-60. On Fragile X-testing, the Policy Statement of the American College of Medical Genetics is, "Fragile X Syndrome: Diagnostic and Carrier Testing", AJMG 53 (1995), 380-1, see also p.382. They do not recommend population testing at this time. A response by D. Shapiro to comments on the Nuffield Council report on genetic screening is in JME 20 (1994), 185-7.

The difference between disease and susceptibility, Wachbroit, R.S. "Distinguishing genetic disease and genetic susceptibility", AJMG 53 (1995), 236-40. An argument based on Rawls that attempts to distinguish eugenics is, Ledley, F.D. "Distinguishing genetics and eugenics on the basis of fairness", JME 20 (1994), 157-64. A review of Rushton, A.R. Genetics and Medicine in the United States, 1800-1922 (John Hopkins University Press, 1994, 209pp., US$45) is in Nature 372 (1995), 331-2. Conflicts in evolutionary biology and physical anthropology are the topics of Shipman, P. The Evolution of Racism: Human Differences and the Use and Abuse of Science (Simon & Schuster, 318pp., $23), reviewed in New Scientist (26 Nov 1994), 48; Lancet 344 (1994), 1421-2. A conference report on culture, kinship and genes is JMG 31 (1994), 893-4; and culture and rehabilitation, J. Rehabilitation (Jan-March 1994), 41+. Consanguineous marriage is discussed in Ann Hum. Genet. 58 (1994), 321-9; Arch. Pediatric. Adolesc. Med. 148 (1994), 412-21; Lancet 344 (1994), 1566. On the legacy of Lysenko, Science 266 (1994), 1085-6.

A journal in Spanish published from Argentina which includes some ethics and genetics papers is Genes, Revista de la Association de Genetica Humana Mar Del Plata, No. 11 was published in Sept. 1994. Contact Dr Justo Zanier, Comision tecnica en Bioetica, Univ. Nac. de mar Del Plata, Juan B. Alberdi 2695, 7600 Mar Del Plata, Argentina.

A book review of Hamer, D. & Copeland, P. The Science of Desire: The Search for the Gay Genes and the Biology of Behavior (Simon & Schuster, 272pp., $23), is in New Scientist (12 Nov 1994), 45- 6. Homosexuality in the International Classification of Diseases is clarified in JAMA 272 (1994), 1660. A study of twins and married couples found that spouses were more similar than twins in their attitudes to love, perhaps because of selection and also parental involvement is discussed, New Scientist (10 Sept 1994), 5; Science 266 (1994), 223. The difficulties in defining mental disease also mean it may be difficult to decide when to fund medical interventions, HCR 24(6), 5-13. Oxytocin influences sexual behaviour, BMJ 309 (1994), 891-2. Letters on dopamine D2 receptor and alcoholism are in Science 266 (1994), 352-3. A New Zealand law report is Dawson, J. "The hanging legal status of mentally disabled people", J. Law & Med. 2: 38-47. A drug to improve memory is reported in Science 266 (1994), 218-9.

Related book reviews are in Genetical Research 64: 146-7; BMJ 309: 1450; NEJM 331 (1994), 1031.

In Japan there has been controversy regarding the publication of a article in a popular magazine, Marco Polo (Feb 1994), 171-9. This issue was collected from book stores and is the last issue of the magazine, which was now completely withdrawn as an apology (it had also not been making too much money so maybe it was not the only reason. Our editor in Israel, Frank Leavitt, reported that the scandal was reported in the English Jerusalem Post but not in the Hebrew press. A discussion of Auschwitz is Time (6 Feb), 50-7.

A paper describing the early history of eugenics in the 20th century in the UK, in what has been called the eugenic generation, is Armytage, W.H.G. "The social context of eugenic thought", Galton Institute Newsletter (Dec 1994), 2-4. More comments on the Bell Curve, are in GenEthics News 4 (1995), 6-8; Science 266 (1994), 1811; Scientific American (Jan 1995), 14-6. Letters on genes and aggression are Science 267 (1995), 437; Nature 373 (1995), 644; also Lancet 345 (1995), 138-9. A commentary is Rose, S. "The rise of neurogenetic determinism", Nature 373 (1995), 380-2.

A paper on the costs and USA policies on prenatal genetic screening is Morris, D.T. "Cost-containment and reproductive autonomy: prenatal genetic screening and the American Health Security Act of 1993", AJLM XX (1994), 295-316. A book review of Rushton. A.R. Genetics and Medicine in the United States 1800 to 1922 (John Hopkins University Press, 1994, 209pp., US$45) is in NEJM 332 (1995), 275-6. On the future, AJHG 56 (1995), 1-10.

A series of comments on genetics and the concept of a person are in the CERPH Newsletter, the 2nd version was published in December 1994. For those who are interested in this project, that was announced last year, contact Dr. P. Goube de Laforest, CERPH, BP 577, 86021 Poitiers, FRANCE. A series of papers in Japanese on the ethics of genetic technology in medicine, from the International Congress of Muscular Dystrophy Associations in Kyoto, 1994, is Popular Medicine (Japan), (March 1995, No. 181).

The Danish Council of Ethics statement on genetic testing in appointments, underwriting, pensions and insurance, is in IJB 5 (1994), 249-50; and their 1993 recommendations on genetic screening are in IJB 5 (1994), 251-2. The Swedish government has proposed guidelines to control the use of preimplantation diagnosis techniques. Part of the proposal is to routinely provide all women with information about prenatal diagnosis.

A book review of Andrews, L.B. et al. Assessing Genetic Risks: Implications for Health and Social Policy (NAS, Washington, 1994, 352pp., US$45) is in JLME 22 (1994), 343-4. The ASHG Ad Hoc Committee on Genetic Testing/Insurance Issues, "Background Statement. Genetic Testing and Insurance", is AJHG 56 (1995), 327-31. Scottish experience with prenatal testing for Huntington's disease is in JMG 32 (1995), 97-101.

A twin study looking at gene/environment effects on phobias is Neale, M.C. et al. "Genetics of blood-injury fears and phobias: A population-based twin study", AJMG 54: 526-34. Hysteria is discussed in Nature 373 (1995), 395. Also on genes and psychology, AJMG 54 (1994), 309-10, 324, 325; 335-44; on schizophrenia, BMJ 310 (1995), 57-8; Lancet 345 (1995), 139-40. A review is Hodge, S.E. "What association analysis can and cannot tell us about the genetics of complex disease", AJMG 54: 318-23.

A paper reporting ongoing efforts to assess genetic technology in general is Bender, W. et al. "On the Assessment of genetic technology: Reaching ethical judgements in the light of modern technology", Science & Engineering Ethics 1 (1995), 21-32.

An ethics committee of the University of Kagoshima Medical School disagreed with the wider application of gene diagnosis of fertilized eggs. The procedure is undertaken to prevent severe hereditary diseases in newborn males. Disorders such as Duchenne muscular dystrophy and hemophilia attack male fetuses, and although the technique has been used, there is still opposition. Yukio Yasuda, lawyer and representative of the Japanese Hemophiliacs Association, said "The disorder is not a fatal disease today. Approval of such a medical treatment may lead to social discrimination against hemophiliacs", Japan Times (18 March 1995); Asahi Shimbun (25 March 1995), 30.

A new book is Dorothy Nelkin and M. Susan Lindee, The DNA Mystique: The Gene as Cultural Icon (New York: W. H. Freeman and Company, 1995). This book examines popular images of genes and criticizes the broad acceptance of genes as the cause of all our traits. On sex differences, another often popular image, Lancet 345 (1995), 638.

A paper on ethics and prenatal screening is Malinowski, M.J. "Coming into being: Law, ethics, and the practice of prenatal genetic screening", Hastings Law J. 45 (1994), 1435-526. Selective abortion is suggested with more direction in France than in the USA according to Bouchard, L. et al. "Selective abortion: A new moral order? Consensus and debate in the medical community", Int. J. Health Services 25 (1995), 65-84. The EU group looking at ethical implications of biotechnology has been cautious over genetic screening, BMJ 310 (1995), 213-4. A review of a US report, Assessing Genetic Risks, is AJHG 56 (1995), 814-6.

On prenatal counseling, Rowley, P.T. et al. "Prenatal genetic counseling for hemoglobinopathy carriers: A comparison of primary providers of prenatal care and professional genetic counselors", AJHG 56 (1995), 769-76. A book review of Grudzinskas, J.G. et al., eds., Screening for Down's syndrome (Cambridge University Press 1994, 346pp., £µ0) is Lancet 345 (1995), 438.

The proceedings of an Australian College of Surgeons conference on Prenatal Diagnosis are available, Ethical Issues in Prenatal Diagnosis and the Termination of Pregnancy, A$15 (+$6 overseas postage) from The Resources Officer, Centre for Human Bioethics, Monash University, Clayton, Victoria 3168, Australia. A discussion of a High Court consent for non-therapeutic sterilisation of an intellectually disabled child in Australia is J. Law & Med. 2 (1994), 6-7.

In association with the International Association of Bioethics, a Network on Ethics and Intellectual Disability is being formed. It will publish a newsletter that, for the time being, will be distributed free of charge to members of the network. If you have any announcements of meetings, publications, and other items of interest, please e-mail them to me by April 17. They would also be interested in publishing case studies involving ethics and retardation. Contact: Robert M. Veatch, Ph. D., The Kennedy Institute of Ethics, Georgetown University Email:; Email: Int+1-202-687-8089. Concepts of disability are discussed in SSM 40 (1995), 649-56.

Reviews on trials for CF screening are Brock, D.J.H. "Carrier screening for cystic fibrosis", Prenatal Diagnosis 14 (1994), 1243-52; Miedzybrodzka, Z.H. et al. "Antenatal screening for carriers of cystic fibrosis: randomised trial of stepwise v. couple screening", BMJ 310 (1995), 353-7, 530.

Studies on counseling approaches for cancer genes include: Shattuck-Eidens, D. et al. "A collaborative survey of 80 mutations in the BRCA1 breast and ovarian cancer susceptibility gene. Implications for presymptomatic testing and screening", JAMA 273 (1995), 535-41; Hoskins, K.F. et al. "Assessment and counseling for women with a family history of breast cancer. A guide for clinicians", JAMA 273 (1995), 577-85. They include criteria for women to be included in the studies.

Negative comments on the study of the genetics of violence are in GenEthics News 5 (1995), 3; Center for Biotechnology Policy and Ethics Newsletter 4(5): 1-2; a general review, Scientific American (March 1995), 100-6; Lancet 345 (1995), 466-7; New Scientist (25 Feb, 1995), 3; and on environmental influences and efforts to stop violence, BMJ 310 (1995), 271-4. Letters on the study of psychotic illness in ethnic groups in the UK are BMJ 310 (1995), 331-2; and in South Africa, Lancet 345 (1995), 534. A conference review on medicine to try to stop aging is in GEN (1 March 1995), 1, 30.

The early science of the 1900s-1950s of the eugenics movement is reviewed in Paul, D.B. & Spencer, H.G. "The hidden science of eugenics", Nature 374 (1995), 302-4. The social context of eugenic thinking is discussed in the Galton Institute Newsletter 16: 1-5; and on modern eugenic trends, CMAJ 151 (1994), 1557-8. On reviews of the Bell Curve, Nature 374 (1995), 10; Science 267 (1995), 779; Nature Genetics 9 (1995), 97-8; Scientific American (April 1995), 140. A claim that it is impossible to separate genes and environment to find genes for intelligence is made in New Scientist (4 March, 1995), 12.

A forthcoming special edition of Health Law Journal (Autumn 1995) will be on "Professional norms in the practice of human genetics". Contributors include: B.M. Knoppers, G. Robertson, C. Laberge, D. Wertz, J. Clarke, J. Dossetor, D. Jones, R. Mykitiuk, T. Caulfield. Price C$25. Available from Health Law Institute, 470 Law Centre, University of Alberta, Edmonton, Alberta, T6G 2H5, CANADA; (Fax Int+1-403-492-4924; Email:

An editorial questioning testing is Harper, P.S. "Direct marketing of cystic fibrosis carrier screening: commercial push or population need?", JMG 32 (1995), 249-50; see also p161. On heterozygote screening for CF, J. Medical Screening 1 (1994), 130-4. Papers on ethics of genetic screening include: JAMA 273 (1995), 845-6, 1154-6; IDHL 46 (1995), 127-8; MJA 162 (1995), 457; Lancet 345 (1995), 848; NEJM 332 (1995), 826; Nature Medicine 1 (1995), 302-3 and in children, JAMA 273 (1995), 1089-90. An interview with Ruth Hubbard is in SA (June 1995), 49-50.

A study of parents of Down's syndrome babies is in Marteau, T.M. & Drake, H. "Attributions for disability: The influence of genetic screening", SSM 40 (1995), 1127-32. A ban on the use of data on human genes in eugenics or the abortion of babies with physical disabilities was discussed by the International Bar Association medical ethics subcommittee, The Scotsman (14 June, 1995).

Disability discrimination is discussed in Richardson, M. "The impact of the Americans with Disabilities Act on employment opportunity for people with disabilities", Ann. Rev. Public Health 15 (1994), 91-105; BMJ 310 (1995), 745; JAMA 273 (1995), 905-6; Lancet 345 (1995), 1371-2; Science 268 (1995), 590-1; SSM 40 (1995), 895-901, 1017-9, 1099-1108, 1231+; and a series of papers in SSM 40 (1995), No. 11, pp. 1441-90.

Determinism is discussed in Nature 375 (1995), 351; NS (25 March, 1995), 42-3. The third issue of the Euroscreen Newsletter includes a paper on sociological perspectives on genetic screening. It is 6 pages, and reports news of the European based project, and items should be sent to Prof. Ruth Chadwick, Centre for Professional Ethics, University of Central Lancashire, Preston PR1 2HE, U.K.

The level of dihydrotestosterone can predict male sexual activity, BMJ 310 (1995), 1289-91. Genes and behaviour were also discussed in the OJ Simpson trial, Science 268 (1995), 22-3; and genetics and criminality were discussed in a London meeting in March, Nature Medicine 1 (1995), 286. The paper reported in the marker section on treatment of genetic-linked alcoholism is discussed in NS (8 April, 1995), 9. Gay gene research is the subject of a book review in NEJM 332 (1995), 1311. On falling sperm concentrations, Lancet 345 (1995), 933-5. A gene, named Age-1, is claimed to be a longevity gene and could increase human life span up to 40 years, Times (18 June, 1995).

Papers on historical aspects on ethics and genetics include: JAMA 273 (1995), 752-3, 1306; AJHG 56 (1995), 1245-7; Newsweek (8 May, 1995), 16-27; Genetics 140 (1995), 421-6; Nature 375 (1995), 826-7. Genetics and developing countries is discussed in light of a high incidence of birth anomalies in rural black children in South Africa, SAMJ 85 (1995), 1-7, 11-15, 15-20.

The UK House of Commons Science and Technology Committee has called for the creation of a Human Genetics Commission, in its report, "Human Genetics: the Science and its consequences" (HMSO, ISBN 0-10-269895-3, £²2.75), which would be a statutory authority to consider and regulate human genetics, Nature 375 (1995), 714; 376 (1995), 199-200, 202; BMJ 311 (1995), 216, 275-6; Lancet 346 (1995), 238-9. In the meantime a voluntary body has been called for by the health minister, BME 109 (1995), 1; in what some believe is an attempt to delay any introduction of laws on human genetics. In the report there were several examples of genetic discrimination cited, and one had been discussed in Parliament, BME 108 (1995), 7. The press coverage of genetics is discussed in Nature Genetics 10 (1995), 251-2.

Criticism of the "Law of the Peoples' Republic of China on Maternal and Infant Health Care", which came into effect on 1 June, 1995, is in an editorial in JMG 32 (1995), 409; Lancet 345 (1995), 1497-8; 346 (1995), 131. A compulsory premarital exam with provisions for marriage of a high risk couple only with contraceptive commitments (Article 10) is of concern. Maternal consent for abortion of handicapped fetuses is included in Article 19.

India will spend 4 million pounds over the next three years to develop skill in human genetics and to use data from the international human genome research project for medical use in India, BMJ 311 (1995), 529.. A government task force on human genetics has just approved a programme to spread the availability of prenatal diagnosis of genetic disorders across the country and to set up research groups capable of delivering gene therapy in India. There are only about four clinics offering DNA based diagnosis now.

A report from Victoria, Australia, with positive results for newborn cystic fibrosis testing is Balnaves, M.E. et al. "The impact of newborn screening on cystic fibrosis testing in Victoria, Australia", JMG 32 (1995), 537-42. They also report a 2.3 times increase since 1989 in prenatal diagnosis. A paper on methods for CF education is Clayton, E.W. et al. "Teaching about cystic fibrosis carrier screening by using written and video information", AJHG 57 (1995), 171-81. A study finding that CF carriers attribute more negative feelings to other carriers than to themselves is G. Evers-Kiebooms et al. "A stigmatising effect of the carrier status for cystic fibrosis?", Clin. Genet. 46 (1994), 336-43. They generally found little evidence of a stigmatising effect of CF status. A letter reporting the screening of sperm donors for CF and reporting the removal of two donors from the sperm bank is BMJ 311 (1995), 1533.

On prenatal testing: Fletcher, J. et al. "Using decision analysis to compare policies for antenatal screening for Down's syndrome", BMJ 311 (1995), 351-6.

A paper outlining the ethical and social issues of Fragile X screening is AJMG57 (1995), 508-9. Attitudes favouring termination of pregnancy are reported in Durosinmi, M.A. et al. "Acceptability of prenatal diagnosis of sickle cell anaemia (SCA) by female patients and parents of SCA patients in Nigeria", SSM 41 (1995), 433-6. A study finding no mood or coping strategy change in patients with symptoms of Huntington's disease following testing is JMG 32 (1995), 516-8. The reactions were compared to patients found not to have the gene for Huntington's disease. The opinions of persons associated with the testing are compared in a Canadian study, Copley, T.T. "Are we all of one mind? Clinicians' and patients' opinions regarding the development of a service protocol for predictive testing for Huntington disease", AJMG57 (1995), 59-69.

A discussion of the problems involved in improvement of the safeguards for clinical genetics services is in Nature Medicine 1 (1995), 501. The needs for counseling in clinical genetics screening is made in Clarke, A. "Population screening for genetic susceptibility to disease", BMJ 311 (1995), 35-8. Genetic counseling is discussed in SSM 41 (1995), 597; AJMG57 (1995), 513; JLME 23 (1995), 199-201; BMJ 311 (1995), 579-80. Experience in Turkey with genetic counseling is in IJB 6 (1995), 160-2 (in French with English summary). An English 12pp. report from a lay panel on predictive genetic research prepared for the European parliament, is available from the Rathenau Report, Postbus 85525, 2508 CE The Hague, The Netherlands. See also, BMJ 311 (1995), 574.

Another dopamine factor in alcoholism has been reported, in Tiihonen, J. et al. "Altered striatal dopamine re-uptake site densities in habitually violent and non-violent alcoholics", Nature Medicine 1 (1995), 654-7, 624-5. However, the lower dopamine transporter molecule frequency in alcoholics (non-violent) could be a result of alcoholism rather than a genetic cause. However, in impulsive violent alcoholics there was no decrease. The "psychobiological" regulation of social cooperation, and alcoholism, is discussed in Nature Medicine 1 (1995), 623-4. Also on dopamine and the mind, Nature 376 (1995), 549-50. A call for careful treatment of hyperactive children is BMJ 310 (1995), 1617-8.

Research that is questioning the "gay gene" studies are in Science 268 (1995), 1841; and a paper arguing against the misuse of such knowledge is Murphy, T.F. "Abortion and the ethics of genetic sexual orientation research", Cambridge Quarterly of Healthcare Ethics 4 (1995), 340-50. A paper on genetic determinism is Alper, J.S. & Beckwith, J. "Genetic fatalism and social policy: The implications of behaviour genetics research", Yale J. Biol. & Med. 66 (1993), 511-24.

An article analysing the results of US mental test scores found that males tended to have greater variability, and often included more high scoring individuals, Hedges, L.V. & Nowell, A. "Sex differences in mental test scores, variability, and numbers of high-scoring individuals", Science 269 (1995), 41-5. A review on society and intelligence is Hunt, E. "The role of intelligence in modern society", American Scientist 83 (1995), 356-68. It continues discussion of themes in the book, The Bell Curve.

Letters and comment from the UK Genetic Interest Group in response to the Clinical Genetics Society Working Party Report on childhood genetic testing is in JMG 32 (1995), 490-2. An analysis of breast cancer gene screening is Parker, L.S. "Breast cancer genetic screening and critical bioethics' gaze", J. Med. Phil. 20 (1995), 313-37. A US study found that 91% of first degree relatives of breast cancer patients wanted to be tested for BRCA1, Lerman, C. et al. "Interest in genetic testing among first-degree relatives of breast cancer patients", AJMG57 (1995), 385-92.

A theoretical subject of whether females select mates with "good genes" is the subject of letters based on seaweed fly studies in Nature 376 (1995), 128.

Several papers on eugenics are in a special issue of Cambridge Quarterly of Healthcare Ethics 4 (1995), including Testart, J. "The new eugenics and medicalized reproduction", pp. 304-12; Sher, G. & Feinman, M.A. "The day-to-day realities: Commentary on the new eugenics and medicalised reproduction", pp. 313-5. That journal is also starting a "Genethics section"! A free booklet entitled Genethics, Debating issues and ethics in genetic engineering, 70pp., copies from Hans-Peter Bernhard, Ciba Communications, PO Box CH4002, Basel, Switzerland. A philosophical paper looking at Derek Parfit's arguments is Brock, D.W. "The non-identity problem and genetic harms - the case of wrongful handicaps", Bioethics 9 (1995), 269-75.

Book reviews on the history of eugenics and race science include: NEJM 332 (1995), 1722; 333 (1995), 196-8; JAMA 274 (1995), 432-4. Several papers on lives of persons with disabilities are in SSM 40 (1995), 1441-90. In the UK several disabled persons have made court cases over the provision of home care, BMJ 310 (1995), 1555. Letters denying racial discrimination in entry to UK medical schools are in BMJ 311 (1995), 1530-2.

An ethics discussion forum on Internet can be subscribed (free) by the following command:

subscribe HUM-MOLGEN first name last name (bionet)

The Genetics and Crime conference in the USA, held 3 years late, was disrupted by protesters, Science 269 (1995), 1808-9; GenEthics News 8 (Sept/Oct 1995), 1-2; Nature Genetics 11 (1995), 223-4; Probe IV (1 May, 1995), 3; Nature 377 (1995), 276. There were a variety of papers. On aggression, Science 270 (1995), 362-3. A book review of interest is Kohn, Marek, The Race Gallery: The Return of Racial Science (Cape, 1995, 322pp, £±8), is Nature 378 (1995), 143.

Extracts from the Summary of conclusions of the UK Parliament Science and Technology Committee, Third Report, Human Genetics: The Science and its Consequences, are in BME 111 (Sept 1995), 8-11. A summary of the conclusions of the Inquiry by the Science and Technology Committee of the House of Commons, Westminster, UK on Human Genetics: The Science and its Consequences is in EuroScreen 4 (1995), 3-4. An editorial calling for protection of privacy and discussing the World Medical Association Statement on genetic diagnosis is Nature 377 (1995), 273, 279. A discussion of the dilemmas of genetic testing is AJPH 85 (1995), 1196-7; Mullen MA. "The New Human Genetics: Ethical Issues and Implications for Public Policy," Kansas Medicine 96 (1995), 55-57. The Royal Society is planning to aid the development of insurance prediction policies for genetic factors, Nature 377 (1995), 375-6.

The quest for the obesity gene has brought many pharmaceutical companies into the research, seeking large profits, GEN (1 Sept 1995), 1, 24. An editorial discussing our obsession with obesity is Nature Genetics 11 (1995), 1-2. Also on the obesity gene, Lancet 346 (1995), 764; Nature 377 (1995), 527-9, 530-2. A study of birds finds that too much fat increases chance of predation, Nature 377 (1995), 621-3. Ethical issues for genetic testing for familial hypertrophic cardiomyopathy in newborns are discussed in Monash Bioethics Review 14 (4, 1995), 26-33. Psychotherapy in general is discussed in NEJM 333 (1995), 591-4.

A paper on risk communication is Evers-Kiebooms, G. "Risk communication in genetic counseling and genetic risk perception", Eur. Rev. Applied Psychology 45 (1995), 23-7. Another paper looking at the way people make their decisions is Verp, M.S. & Heckerling, P.S. "Use of decision analysis to evaluate patient's choices of diagnostic prenatal test", AJMG (1995), 337-344. The idea of fetal privacy is discussed in Botkin, J.R. "Fetal privacy and confidentiality", HCR 25 (5, 1995), 32-9. Children's attitudes are reported in Decruyenaere, M. et al. "Adolescents' opinions about genetic risk information, prenatal diagnosis, and pregnancy termination", JMG 32 (1995), 799-804, 805. Genetic testing of children is discussed in Arch. Disease in Childhood 73 (1995), 97-9. We can also do genetic testing in the classroom, BMJ 311 (1995), 1026.

A study showing that 72% of consanguineous couples who received genetic counseling continued with plans to marry, Shiloh, S. et al. "Pre-marital genetic counseling to consanguineous couples: Attitudes, beliefs and decisions among counselled, noncounselled and unrelated couples in Israel", SSM 41 (1995), 1301-10. However, 86% reported that the counseling influenced their plans. A study in Saudi Arabia found consanguinity ranges from 34 to 80%, JMG 32 (1995), 623-6.

A US survey presented to the Meeting of the American Society of Human Genetics found concern that new genetic tests are being introduced too quickly and rapidly, Nature 378 (1995), 120-1. Of 54 biotechnology companies that said that they were developing genetic tests, 41% had never contacted the FDA or their own Institutional Review Board; and out of 140 academic institutions, a quarter had not. A summary of recent recommendations is Mark, N.F.L. et al. "Current issue of personnel and laboratory practices in genetic testing", JMG 32 (1995), 780-6. A call for improved knowledge of genetics among UK doctors is Nature 377 (1995), 466; and an effort for education of the public is occuring in Manchester, Lancet 346 (1995), 568.

A study funding inferiority among carriers is Rosenberg, N.K. "Neuropsychological characteristics of Huntington's disease carriers: a double blind study", JMG 32 (1995), 600-4. Different psychological circumstances alter the status, as shown in Fanos, J.H. & Johnson, J.P. "Perception of carrier status by cystic fibrosis siblings", AJHG 56 (1995), 431-8. A study suggesting that prenatal diagnosis has not influenced attitudes to Down's syndrome is JMG 32 (1995), 597-9. Genetic testing and BRCA1 is discussed in the methodology section, see also Lancet 346 (1995), 583.

A survey of 973 UK general public is reported in Marteau, T. et al. "Public attitudes towards the selection of desirable characteristics in children", JMG 32 (1995), 796-8. They report increasing support for genetic enhancement in the UK public. A paper on the heritibility of intelligence is Galton Institute Newsletter (Sept 1995), 3-4; Nature 377 (1995), 581-2. IQ has apparently risen over this century, but it may be performance in tests or better education, SA (Nov 1995), 12, 14. A general paper on genetic reductionism is Belsey, A. "Genetic screening and the philosophy of science", EuroScreen 4 (1995), 1-2. On the gene as a cultural icon, see a book review in Nature 377 (1995), 113.

The University of Claude Bernard in Lyons, France is voting on whether to remove the name of Alexis Carrel, from the Faculty of Medicine, Nature 376 (1995), 122. He was linked to the France Facist party and eugenics. A letter on eugenics in China is Lancet 346 (1995), 508-9; and there will be a session on eugenics at the 1998 International Genetics Congress in Beijing, Nature 378 (1995), 7. An editorial on population genetics and racism is Nature 377 (1995), 183-4. The classification of disability is discussed in Arch. Disease in Childhood 73 (1995), 91-9. A related review is Horgan, J. "The new Social Darwinists", SA (Oct 1995), 174-81. A call for doctors to combat genocide is Lancet 346 (1995), 577.

A gene is apparently linked to red hair colour, that works in a relatively simple manner linked to variation in the MC!R gene which encodes the melanocyte-stimulating hormone receptor (MSH-R), Nature Genetics 11 (1995), 328-30, 225-6. It is also linked to tanning phenotype. Short stature as a function of socio-economics is reported in Peck, M.N. & Lundberg, O. "Short stature as an effect of economic and social conditions in childhood", SSM 41 (1995), 733-8. Social aspects of illness behaviour are reviewed in SSM 41 (1995), 1207-16.

The French National Advisory Committee on Bioethics has recently published a statement on the potential dangers of genetic testing, EBN 211 (1995), 2-3. A discussion of the ethics of genetic screening is in GEN (Dec 1995),4, 31; JAMA 274 (1995), 1563-4, 1661-2; Nature Medicine 1 (1995), 855-6; NS (28 Oct 1995), 14-5; University of Pennsylvania Center for Bioethics Newsletter 1 (3, 1995), 1-2. The World Medical Association statement on predictive medicine is in BME 113 (1995), 5-6; and a colloquy report on genetic predisposition is in Human Genome News (July-August 1995), 7. An American College of Genetics statement on the use of ApoE testing for Alzheimer's disease is JAMA 274 (1995), 1627-9; and a statement made by the American College and Society of Human Genetics, "Points to Consider: Ethical, legal, and psychosocial implications of genetic testing in children and adolescents", AJHG 57 (1995), 1233-41. Information sharing for Fragile X is in McConkie-Rosell, A. et. al. "Dissemination of genetic risk information to relatives in the Fragile X syndrome: Guidelines for genetic counselors", AJMG 59 (1995), 426-30. The right not to know is discussed in Hospital Ethics (July/Aug 1995), 10-1.

Further debate follows the confirmation by Dean Hamer and colleagues of a genetic marker with male homosexuality on Xq28, Lancet 346 (1995), 1309; Economist (4 Nov 1995), 91-2. Transsexuality linkage to a brain region is further discussed in Time (13 Nov 1995), 62, 67. A book review on emotional intelligence is Nature 378 (1995), 34-5; on psychology and religious belief, NS (11 Nov 1995), 44-5; on IQ and test scores, Nature 378 (1995), 529; Science 270 (1995), 1446-7; and a discussion of family likeness, Nature 378 (1995), 669. Genetic mapping of genes for human personality are reviewed in Nature Genetics 12 (1996), 3-4; following the papers of Ebstein, R.P. et al. "Dopamine D4 receptor (D4DR) exon III polymorphism associated with the human personality trait of Novelty Seeking", Nature Genetics 12 (1996), 78-80; pp. 81-4; BMJ 312 (1996), 75-6.

Genes and crime are debated in SA (Dec 1995), 19-20; Nature Medicine 1 (1995), 1108-9; NS (21 Oct), 51, (25 Nov 1995), 17; Probe (1 Dec 1995), 7; and the president of the Behavior Genetics Association has been criticized by some board members for comments on the need for study of the issue, Science 270 (1995), 1125. Autism and genes are being researched with a finding that many parents of autistic children have some autistic-like behaviour, Science 270 (1995), 1305.

There has been debate on prenatal diagnosis in the Netherlands since the disclosure that two terminations were made last year of fetuses that would be blind, BMJ 311 (1995), 1187. New Zealanders' attitudes to mentally ill persons are reported in NZMJ 108 (995), 505-8.

A trial of ways to share information about prenatal testing is shown in BMJ 311 (1995), 1127-30. A shop specializing in genetic information is in Manchester, UK, Nature Medicine 1 (1995), 981.

Genetics and ethics in Norway is reviewed in Berg, K. et al. "Genetics in democratic societies - the Nordic perspective", Clin. Genet. 48 (1995), 199-208. The balance between social and genetic differences that affect health between races is discussed in Public Health Reports 110 (1995), 570-2. On the general issue of ethics of genetics a television program summary is in BMJ 311 (1995), 1376-7. Counseling in cancer is discussed in BMJ 311 (1995), 1316-7; Lancet 346 (1995), 1114-5.

The Chinese eugenics law and prenatal diagnosis and eugenics is discussed in Nature 378 (1995), 549. Several papers on the Holocaust are in J. Appl. Phil. 12 (1995), 125-50. The Americans with Disabilities Act is discussed in NS (18 Nov 1995), 54-7. Eugenics and genetic research is discussed in Probe IV (10, 1 Nov 1995), 1, 6-8.

A paper discussing ethical issues and the scarcity of resources that can be allocated to genetic testing is Allan, D. "Ethical boundaries in genetic testing", CMAJ 154 (1996), 241-244. Several papers and a report "Genetique et medecine: de la prediction a la prevention" in French on predictive medicine are in Les Cahiers of the French National Ethics Committee 6 (Jan 1996), 30-50. A special issue of Health Law Journal 3 (1995), 1-328 is titled "Professional Norms in the Practice of Human Genetics" (Health Law Institute, University of Alberta). It includes a number of papers, including surveys of professional geneticists in Canada, and 13 papers. There are also over ten papers in Law and the Human Genome Review 2 (Jan-June 1995), 1-299, from the BBV Foundation, the government of Biscay.

An Advisory Committee on Genetic testing in the UK will be chaired by John Polkinghorne instead of a recommended statutory committee, BME 114 (1996), 3; BMJ 312 (1996), 142, 465; Science 271 (1996), 287; Nature 379 (1996), 195; Nature Medicine 2 (1996), 139. The terms of reference will be to provide advice to ministers on developments in testing for genetic disorders; on testing individuals for genetic disorders, taking account of ethical, social and scientific aspects; to establish requirements, especially in respect of efficacy and product information, to be met by manufacturers and suppliers of genetic tests. A survey of attendance of ethnic minorities at genetics clinics in Birmingham finds less Pakistani couples come, JMG 33 (1996), 56-8.

On general aspects of genetic testing and ethics, Lancet 347 (1996), 133; Evans MI et al. "Parental decisions to terminate/continue following abnormal cytogenetic prenatal diagnosis: "What" is still more important than "when"", AJMG 61 (1996), 353-5. The right to the information is discussed in the section above, also several commentaries in Nature 379 (1996), 379, 389-92.

On cancer screening, David E.C. Cole, DEC et al. "Genetic counselling and testing for susceptibility to breast, ovarian and colon cancer: Where are we today?", CMAJ 154 (1996), 149-155; Macdonald KG et al. "A sociobehavioural perspective on genetic testing and counselling for heritable breast, ovarian and colon cancer", CMAJ 154 (1996), 457-464. Because there are no outcome data on which to base practice guidelines for genetic screening or management of asymptomatic carriers in families at risk, they think testing for BRCA1, BRCA2, HNPCC should be restricted to research settings. A letter on the subject is Nature Genetics 11 (1995),364.

The group Inclusion International (Int. League of Societies for persons with a mental handicap, Galeries de la Toison d'or, 29 Chaussee d'Ixelles, # 393/12, 1050 Brussels, Belgium), has issued a response, Protecting Human Dignity and Human Rights as a response to the UNESCO genome declaration. They oppose germ-line gene therapy and also want to stress the eugenic dangers of prenatal diagnosis. A follow-up of 260 children identified in 1964-5 with mental handicap is presented in Wald, I "Follow-up studies of a representative sample of children with severe mental handicap in Poland", J. Intellectual Disability Research 39 (1995), 465-73. The Sept.-Oct. 1995 issue of World Health focuses on mental health and equal rights.

Personality and genetics are discussed in, Nature Genetics 12 (1996), 115-6; BMJ 312 (1996), 75; Science 271 (1996), 579. Research on homosexuality and genetics is reviewed in Nature Genetics 11 (1995), 353-4; Lancet 347 (1996), 266-7; and lod score calculations in Nature Genetics 11 (1995), 354-5. Related to determinism see Lancet 346 (1995), 1544; and eugenics, Nature 379 (1996), 575; NEJM 333 (1995), 1969. School test score comparisons are not so reliable, Science 271 (1996), 433. Discussion of a Canadian sterilization case is BMJ 312 (1996), 329.

The European Group of Advisors on Ethical Issues Related to Biotechnology, has recommended the use of prenatal diagnosis should be restricted to "precise medical indications" in a set of guidelines dated 20 February, 1996; from the rapporteur on the topic, Prof. Stefano Rodota (Italy); Nature 380 (1996), 762; NS (2 March 1996), 13. There will also be the establishment of a European diploma in genetic counseling. A new book is Marteau, TM. & Richards, MPM (Eds) The Troubled Helix: Social and Psychological Implications of the New Genetics (Cambridge University Press, 1996). In general on genetic screening and ethics, GEN (1 Feb 1996), 12; J. Public Health Medicine 18 (1996), 3-5; JME 22 (1996), 53-4; Lancet 347 (1996), 685-6; and the above section.

A book review of an English translation of GenEthik, Bayertz, Kurt, GenEthics. Technological Intervention in Human Reproduction as a Philosophical Problem (Cambridge University Press 1994, 342pp.) is in Bioethics 10 (1996), 173-6.

Papers on eugenics include; JAMA 275 (1996), 734, 737; Nature 380 (1996), 399-400. The second part of report from the 1995 Galton Institute Conference on Biological and Social Aspects of Intelligence is in Galton Institute Newsletter (March 1996), 4-6. There is a campaign to stop the search for intelligence genes in the UK, GenEthics News 10 (Jan/Feb 1996), 1-2, 9; however, it seems very unrealistic to think it will stop. An examination of the US law on rights of disabled is Watkins, C. "Beyond status: The Americans with Disabilities Act and the parental rights of people labeled developmentally disabled or mentally retarded", California Law Review 83 (1995), 1415-75. There are problems with definitions of disability, Disability & Rehabilitation 18 (1996), 52-4.

The involvement of dopamine in alcoholism is confirmed in Muramatsu, T. et al. "Association between alcoholism and the dopamine D4 receptor gene", JMG 33 (1996), 113-5. This link is also found for cocaine addiction, Science 271 (1996), 1586-8. On ethics and alcoholism in the elderly, JAMA 275 (1996), 797-801. Monoamine oxidase appears to be involved in smoking behaviour, Nature 380 (1996), 733-6; Lancet 347 (1996), 527. The origins of behaviour are discussed in NS (10 Feb 1996), 40-1. A study finding increased uncertainty and lack of trust in persons with Parkinson's disease is European J. Public Health 6 (1996), 58-63.

There is still some discussion in the UK about the reasons why a Human Genetics Commission is not needed, BME 116 (1996), 2; see also, GenEthics News 10 (Jan/Feb 1996), 1-2. The government has appeared to rethink its decision and may set up a committee, BMJ 312 (1996), 600; Nature 380 (1996), 6; NS (16 March 1996), 10. A letter on mail order gene testing to the UK company University Diagnostics Ltd. (UDL - address not given in the paper!) for cystic fibrosis screening is Bull, S. "Mail order gene testing", BME 115 (1996), 20-1; and Europe is debating the access to such tests, Lancet 347 (1996), 822. The Danish Parliament has voted against extending use of preimplantation diagnosis to other cases than a known threat of severe disease, EBN 220 (1996), 2. A book review of Kitcher, Philip, The Lives to Come: The Genetic Revolution and Human Possibilities (Simon & Schuster/ Allen Lane, 1996, 381pp.) is Nature 380 (1996), 591-2. In general, Dickens BM, et al. "Legal and ethical issues in genetic testing and counselling for susceptibility to breast, ovarian and colon cancer", CMAJ 154 (1996), 813-818; Taylor, KM et al. The emerging role of the physician in genetic counselling and testing for heritable breast, ovarian and colon cancer", CMAJ 154 (1996), 1155-1158.

A study in the USA by Clayton, EW. et al. AJHG 58 (1996), ; NS (13 April 1996), 8; suggests few people want to know their carrier status. They put up signs advertising for free tests for CF and of an estimated 125,000 who visited the clinics, only 238 ordered a catalogue and 179 provided blood samples. Of people asked about testing, two thirds said that they were uneasy about testing. A women's health advisory panel to the NIH has cautioned against the uncontrolled use of susceptibility genetic tests for breast and ovarian cancers, Nature 380 (1996), 573. In the USA, the chair of the Human Genome Project ELSI committee, Lori Andrews, stepped down in protest against the oversight of the committee, Nature 380 (1996), 96.

Papers on genetics and informed consent are Science 271 (1996), 1346-7; JAMA 275 (1996), 503-4; Marteau, TM. "Towards informed decisions about prenatal testing: A review", Prenatal Diagnosis 15 (1995), 1215-26; Lancet 347 (1996), 883-4. On children and genetic testing, Clayton, EW. "Removing the shadow of the law from the debate about genetic testing of children", AJMG 57 (1995), 630-4. A discussion of parental anxiety is Prenatal Diagnosis 15 (1995), 1209-13. A review of genetic researchers seeking complex disease genes is Science 271 (1996), 1352-4.

A discussion of commercialization of genetic screening is in EuroScreen 5 (Spring 1996), 1-7; CQHE 5 (1996), 300-6; Nature Medicine 2 (1996), 613-4. The changing nature of patients and "unpatients" following the introduction of genetic screening is discussed in Nature Medicine 2 (1996), 622-4. Jeremy Rifkin has begun to focus attention on genetic screening, Science 272 (1996), 1094.

Identification of relatives for CF carrier testing can be through proband or parents, AJMG 63 (1996), 419-25. A study of persons over 16 years in high schools is Wake, SA et al. "Cystic fibrosis carrier screening in two New South Wales country towns", MJA 164 (1996), 471-4. Population screening is suggested in Axworthy, D. et al. "Psychological impact of population-based carrier testing for cystic fibrosis: 3-year follow-up", Lancet 347 (1996), 1443-6, 1421. A study of at-risk status is Kenen, RH. "The at-risk health status and technology: a diagnostic invitation and the 'gift' of knowing", SSM 42 (1996), 1545-53. On presymptomatic testing, Lancet 347 (1996), 1101-2.

The UK Health Minister has announced plans to establish an Advisory Committee on Genetic Testing, BMJ 312 (1996), 1119; Nature 381 (1996), 640; Lancet 347 (1996), 1254 EuroScreen 5 (Spring 1996), 8-9. The Health Council of the Netherlands has recently prepared a report on clinical genetic testing yet to be released Network 10 (March 1996), 36. The seventh issue of Studies in Research Ethics in Sweden focuses on the motives of medical specialists in introducing prenatal diagnosis in Sweden, and copies are available for US$15 from Stellan Welin, Centre for Research Ethics, Brogatan 4, S-41301 Goteborg, Sweden.

Genetics and crime is discussed in a number of papers in Politics & Life Sciences 15 (1996), 83-110. Psychology and genetics is discussed in GenEthics News 11 (1996), 5-6. On racial science, Probe V No. 3 (1 June 1996), 1, 4-6; BMJ 312 (1996), 1168-9; and racism in health care, Nursing Times (29 May 1996), 26-32; Time (27 May 1996), 31. A review of alcoholic mice studies and genetics is Melo, JA. et al. "Identification of sex-specific quantitative trait loci controlling alcohol preference in C57BL/6 mice", Nature Genetics 13 (1996), 147-53, 137-8. On gay genes and such-research, Schuklenk, U. & Ristow, M. "The ethics of research into the cause(s) of homosexuality", J. Homosexuality 31 (No. 3, 1996), 6-30. The US ELSI Working Group Response to The Bell Curve is on the Internet < Human_Genome/publicat/hgn/v7n5/16bellcu.html; Human Genome News January-March 1996; 7(5).

Guidelines on breast cancer gene screening are discussed in Nature 381 (1996), 184, 543; Lancet 347 (1996), 1033, 1189, 1493; and on cancer tests, SA (June 1996), 38-9. In general on ethics and genetics, Lancet 347 (1996), 1394; NS (25 May 1996), 44-5; NEJM 334 (1996), 1192-4, 1411; AJHG 58 (1996), 903-5, 906-13; JAMA 275 (1996), 1440-6; Hepburn, ER. "Genetic testing and early diagnosis and intervention: boon or burden?", JME 22 (1996), 105-10; Michie, S. et al. "Parents' responses to predictive genetic testing in their children: report of a single case study", JMG 33 (1996), 313-8; Asch, DA et al. "Genetic screening for reproductive planning: methodological and conceptual issues in policy analysis", AJPH 86 (1996), 684-90. In the USA there is higher use of prenatal diagnosis by whites and Asians and less use by African Americans and Laininas, which are due to a variety of reasons, Kuppermann, M. et al. "Racial-ethnic differences in prenatal diagnostic test use and outcomes: Preferences, socioeconomics, or patient knowledge?", O&G 87 (1996), 675-82.

Eugenics is debated in Fenner, DEW. "Negative eugenics and ethical decisions", J.Medical Humanities 17 (1996), 17-30. Papers on the Americans with Disabilities Act include J. Med. Phil. 21 (1996), 187-208., 209-224, 225-34. A discussion of disability and justice is McMahan, "Cognitive disability, misfortune, and justice", Phil. & Pub. Affairs 25 (Winter 1996), 3-35. On genetics and behaviour, Nature 381 (1996), 287-9; Science 272 (1996), 644; Nature 381 (1996), 33, 105.

An on-line bibliography with numerous papers under many headings (but still expanding selection) is available < It is a good complement to the literature bibliography available at the Eubios Ethics Institute, and gives many keywords. An expanding set of on-line resources has appeared at the NIH, called Genetics and Public Issues, <, which is a good addition to the bioethics available on Internet.

Further explanation of the UK review commission on genetics (see last issue) is in BME 119 (1996), 3; Nature Medicine 2 (1996), 839. Two meeting reports from Europe on genetic testing of children are in BME 119 (1996), 22-3. The BMA has called for evidence on ethical implications of new genetic technology, BMJ 313 (1996), 367.

Testing for the breast cancer predisposition gene, BRCA1, is discussed in Lerman, C. et al. "BRCA1 testing in families with hereditary breast-ovarian cancer", JAMA 275 (1996), 1885-92, 1928-9; BMJ 313 (1996), 506-7, 572-3; Lancet 347 (1996), 1638, 1643-5, 1645-6; 348 (1996), 477. Some Jewish women have higher rates. On ethical and economic issues about cancer screening, MJA 165 (1996), 68-9; AJHG 57 (1996), 287-8; J. Health Economics 15 (1996), 377-80; Oncology Nursing Forum 22 Suppl. 2 (1995), 27-34; Annals NY Acad. Sci. 768 (1996), 41-52. On politics of cancer, Nature Medicine 2 (1996), 937-8.

A new book is Knoppers, BK., Caulfield, T. & Kinsella, TD. eds., Legal Rights and Human Genetic Material (Toronto: Emond Montgomery Publications Ltd. 1996, 177pp., ISBN 0-920722-86-5). It is the result of the Canadian ELSI program and looks at the state of DNA Banking in Canada, ideal conditions, a collection of DNA consent forms and the production of an ideal form for taking DNA samples. The editors, and authors, were involved in organizing a conference on DNA Sampling in Montreal, 5-8 September, discussed in the editorial of this issue. Also on informed consent the American Society of Human Genetics statement is in AJHG 57 (1996), 471-4. In this issue of EJAIB 6 (196) is the statement by the Japan Society of Human Genetics.

A study of 62 affected adults found that they thought 10-12 years old was an appropriate time to discuss their genetic disease with their children, Whitelaw, S. et al. "Attitudes to predictive DNA testing in familial adenomatous polyposis", JMG 33 (1996), 540-3. A study finding support groups less likely to terminate a pregnancy than parents is Smith, LB. et al. "Attitudes towards bipolar disorder and predictive genetic testing among patients and providers", ", JMG 33 (1996), 544-9.

A report from the Gothenburg Centre for Research Ethics in Sweden is Munthe, C. The moral roots of prenatal diagnosis. Ethical aspects of the early introduction and presentation of prenatal diagnosis in Sweden (Centre for Research Ethics, Studies in Research Ethics No. 7, 88pp). In the 1970s 3 reasons were used to introduce prenatal diagnosis, genetic counseling removes anxiety of mothers, reduce the number of children born with certain diseases, and economic advantages to society. Also on the ethics of prenatal diagnosis, Issues in Medical Ethics (India) 4 (1996), 81-4.

Discussion of the US Defense department registry of blood samples (now over one million have been collected but not all have been analyzed), is in GeneWatch 10 (August 1996), 1, 3, 11. A number of concerns about US military department involvement in collection of cell lines from different population groups is reported in RAFI Communique (March/April 1996), 7-9; on-line at <

The link between intelligence and the X chromosome is discussed in Lancet 347 (1996), 1814-5. A study has found that a pH of 7.1 versus 7.0 in the brain has a significant correlation with intelligence, NS (17 August 1996), 16; Proc. Royal Soc. London B No. 1373 (1996), 1061+. Behavioural genetics is discussed in HCR 26 (July/August 1996), 13-8; Nature 381 (1996), 748-9. The future of genetic studies of complex human diseases is reviewed in Science 273 (1996), 1516-1517; TIG 11 (1996), 520-3. The US NIH ELSI committee statement against the Bell Curve is in AJHG 59 (1996), 487-8. The question whether children who are hyperactive should take medication is debated in Lancet 348 (1996), 73-4, 255; SA (Aug. 1996), 12-4. A book review of Jones, S. In the Blood: God, Genes and Destiny (HarperCollins 1996) is in Nature 382 (1996), 413-4. The journal Ethnology and Sociobiology is changing its name to Evolution and Human Behaviour from 1997, after criticism of sociobiology, Science 273 (1996), 315.

Book reviews of Pernick, MS, The Black Stork: Eugenics and the death of "defective" babies in American medicine and motion pictures since 1915 (Oxford Univ. press, 1996), are in Nature 382 (1996), 217-8; NEJM 335 (1996), 526; and on mental illness before 1914, JAMA 276 (1996), 251-2, 444b.

A listing of current laws on genetic screening. gene therapy and human genetics has been updated to August 1996 by WHO (Sev Fluss, Program Manager for Human Rights, Office of the Executive Administrator for Health Policy in Development, WHO, Geneva, Fax +41-22-791-4868). Most of these laws have been discussed in EJAIB, and a search through the Int. Digest of Health Legislation should find the country texts. Please note the: Beijing Declaration and Platform for Action (15 Sept 1995), endorsed by UN General Assembly (22 Dec. 1995), Para 109 (1): calls for (inter alia) the monitoring of human genome and related genetic research from the perspective of women's health.

Guidelines on ethical issues in medical genetics and the provision of medical services prepared by Wertz, DC., Fletcher, JC, and Berg, K. in cooperation with WHO in 1995, have been made aimed at improving and regulating genetic services in developing countries. However there implementation and adoption by WHO has been politically difficult, and those who support them or want to receive details should contact: Dr. Victor Bulyvenkov, Directory of the Hereditary Diseases Program of WHO, in Geneva.

A conference report from June 1996 on genetic testing in children is in EuroScreen 6 (Autumn 1996), 5-7. A letter on whether parents should be informed about the carrier status of their children is in AJMG 65 (1996), 89. A letter arguing that prenatal screening for carriers of cystic fibrosis should screen both partners individually is BMJ 313 (1996), 820-1. Genetic test results are also discussed in BMJ 313 (1996), 838; JAMA 276 (1996), 1016; IDHL 47 (1996), 411-4. An editorial looking at the case of hereditary pancretitis, in which family members are being recontacted now a gene has been identified, Nature Genetics 14 (1996), 117-8, 141-5.

A comment on the interim principles of the Task Force on Genetic Testing of the NIH-DOE Working Group on the Ethical, Legal, and Social Implications (ELSI) of the US HGP is Nature Biotechnology 14 (1996), 678. To request copies or make comments, contact Joshua Brown, Task Force on Genetic Testing, 550 N. Broadway, Suite 511, Baltimore MD 21205, USA (Fax 1-410-955-0241, Email:, <>.

Genetic testing of families with hereditary diseases is discussed in a letter in JAMA 276 (9 Oct. 1996). A letter criticizing the statement by Hubbard R, & Lewontin RC. (Pitfalls of genetic testing. NEJM 334 (1996), 1192-4), that "DNA tests cannot usually help clinicians or benefit patients" is in NEJM 335 (1996), 1235-7. It was in response to the doctors offering 185delAG testing in BRCA1 gene to Jewish people. They make a point that testing for a predisposition to cancer must not be restricted by self-interest to the research and bioethics communities. Uncertainty over the use of results of tests for BRCA1 and BRCA2, linked to hereditary breast and ovarian cancer, is raising questions, Science 274 (1996), 496-498; Nature Genetics 14 (1996), 185-7, 188-90; Lancet 348 (1996), 760, 965. There are now questions about whether Jewish women will be discriminated against in insurance in the USA, following the publication of genetic studies.

A summary of ELSI studies on cystic fibrosis suggest worries about counseling and informed consent were justified, the investigators also found that people offered the test don't take it unless they are already planning to have children who may be affected, Science 274 (1996), 489.

A school program that has led to decreased incidence by 90-95% for two diseases is reported from Montreal in Mitchell, JJ. et al. "Twenty-year outcome analysis of genetic screening programs for Tay Sachs and beta-thalassemia disease carriers in high schools", AJHG 59 (1996), 793-8, 762-3. A number of abstracts from the Annual Meeting of the American Society of Human Genetics, AJHG 59 (1996), Supplement, include counseling, education and public policy themes. A study of the impact of testing from Belgium is Decruyenaere, M. et al. "Prediction of psychological functioning one year after the predictive test for Huntington's disease and impact of the test result on reproductive decision making", JMG 33 (1996), 737-43. A French study finding only 14% of persons refused to contact the families about cancer risks is Julian-Reynier, C. et al. "Attitudes towards cancer predictive testing and transmission of information to the family", JMG 33 (1996), 731-6. On disease susceptibility genes as keys for treatment and prevention, Science 274 (1996), 497.

A review on the heritability of happiness by DH. Hamer is in Nature Genetics 14 (1996), 125-6; Psychological Science 7 (1996), 186-9. Mice that lack a type of serotonin receptor have increased alcohol consumption, Crabbe, JC. et al. "Elevated alcohol consumption in null mutant mice lacking 5-HT1B serotonin receptors, Nature Genetics 14 (1996), 98-101; NS (14 Sept. 1996), 16. These mice stay sober but become aggressive. A study among Atayal natives in Taiwan has found no association between TaqI A1 allele of dopamine D2 receptor gene and alcohol-use disorders, AJMG 67 (1996), 488-90. On genetic markers for intelligence, BME 120 (1996), 13-6; Lancet 348 (1996), 826. On abuse of homosexuality research, JAMA 276 (1996), 836-7; NS (23 Sept. 1996), 32-5. The sexual orientation of Drosophila is altered by the satori mutation, one gene, PNAS 93 (1996), 9687-92.

A discussion in Japanese language of a meeting between academics and families and patients with muscular dystrophy held in Tokyo in June (referred to in the paper by organizers Kaiya and Macer, in EJAIB 6 (1996), 103-5) is in Karada Kagaku 191 (1996), 2-16. Advice on treatment of handicapped babies is in BMJ 313 (1996), 963-4.

Genethics and eugenics are discussed in a book review in Nature Biotechnology 14 (1996), 1305-6. A paper on the social context of eugenic thought is in Galton Institute Newsletter (June 1996), 4-7, (Sept 1996), 4-6; and on eugenics, Nature Genetics 14 (1996), 17. A paper looking at family violence, small wars and invisible genocide is SSM 43 (1996), 889-900. A report on a recent case in Alberta where a women won a lawsuit against the government for wrongful sterilization when she was a 14 year old, CMAJ 155 (1996), 789-92.

The growth of eugenics in China is discussed in TLS (12 January 1996), 4-5; Nature 383 (1996), 204. A UK ballot of 1600 members of the International Genetics Federation (IGF) on withdrawal because of the 1998 meeting being held in China resulted in only 100 returns and 60 approving a boycott, and 40 opposing - not convincing survey results! The IGF position is that within the symposium there will be a session discussing eugenics, Nature 383 (1996), 569.

A review of the book, Ruston, JP., Race, Evolution and Behavior, which suggests whites are smarter than blacks is in Probe V (Sept, 1996), 1, 4-7. He is reported discussing this with white supremacy groups in the USA. A claim that half of German doctors were Nazis is BMJ 313 (1996), 900.

A 53 member panel organized by the Stanford Program in Genomics, Ethics and Society, of Stanford University has drafted a report and guidelines on the introduction and use of screening for BRCA1 and BRCA2, and held a forum during the IAB Congress on 23 Nov in San Francisco, Nature 384 (1996), 297. DM was one of the speakers in what was a successful day long meeting. The final report will be available soon, and will be announced in EJAIB then (Contact details: Stanford University Center for Biomedical Ethics, 701A Welch Road, Suite 1105, Palo Alto, CA 94304, USA. Another Code for general use is in Baumiller, RC et al. "Code of ethical principles for genetic professionals", AJMG 65 (1996), 177-83.

Informed choice for users of health services and views on ultrasonography leaflets for women in early pregnancy, midwives, and ultrasonographers is BMJ 313 (1996), 1251-4. A prenatal genetic questionnaire can be used for risk assessment, O&G 88 (1996), 806-10. On the problems in obtaining family histories from breast cancer families because of confidentiality concerns, Lancet 348 (1996), 1034. On genetic counseling, TIG 12(1996), 428; TIBS 21 (1996), 404; and abstracts from an annual meeting in the UK are in JMG 33 (1996), Supplement 1, S36-9. On mental retardation, AJPH 86 (1996), 1359-61.

A 1996 study by the Australian Human Rights and Equal Opportunity Commission has said that genetic testing should not be made accessible to insurance companies, superannuation funds and law enforcement agencies without the consent of the person, Nature Medicine 2 (1996), 1168. Avoiding discrimination against disabled people is discussed in BMJ 313 (1996), 1346-7. Letters on anonymous Fragile X testing are in AJHG 58 (1996), 1168-70. High anxiety and lazy genes is the title of a report on a gene for neurosis, Science 274 (1996), 1527; NS (7 Dec 1996), 22. A discussion of whether big is still beautiful in Polynesia is Lancet 348 (1996), 1047-8.

A new on-line journal on genetics and ethics has begun in the USA, called Geneletter, <>. Its first issue was July 1996, and it is edited by P Reilly and DC Wertz of the Shriver Center, Boston, USA. It is sponsored by the US NIH/DOE genome project. The cross-references and links were almost exclusively North American, so it is hoped that it will link into the International system of journals and information pages on genetics and ethics, see a list of these on the Eubios Other Information page which is to be found in NZ, Japan and the UK. Topics in the November 1996 issue included a mixture of science and ethics for GMOs and medical genetics. Another recent addition to the links page is IfGene International, which has sites in the UK and USA, with a focus on GMO work. A review of a conference they organised on the future of DNA is BME 122 (1996), 21-3. A series of papers on ethics, law and genetics are in Law and the Human Genome Review 4 (Jan-June 1996), 1-229.

Norway has had a Medical Biotechnology Advisory Board since 1995, making the claims that the UK was first to have such a committee, incorrect, Nature 384 (1996), 208. On the members of the UK Human Genetics Advisory Commission, Nature 384 (1996), 393; BME 122 (1996), 6-7. The US FDA is called upon to regulate both diagnostic kits for genetic testing as well as so-called "in-house protocols" that constitute most genetic susceptibility tests, is Nature Biotechnology 14 (1996), 1627, 1642; Nature 384 (1996), 93, 101. There are test guidelines recommended by the American Society of Human Genetics and the US Task Force on Genetic Testing, which are recommended in the editorial to the FDA. In the University of Pennsylvania less than 20% of patients asked to be in a long-term follow up of BRCA1 and BRCA2 have joined, because of privacy concerns, Nature 384 (1996), 303. A report from the Health Council of the Netherlands Population Screening Act Committee is Network 10 (Dec 1996), 9. The Act provides for a licensing system, and the process is being prepared to allow this. A paper on the Canadian system is Sharpe, NF. "Genetic screening and testing in Canada: A model duty of care", Health Law Journal 4 (1996), 119-34

A study of genetic and environmental contributions to motor skills is Nature 384 (1996), 356-8. Responses to fearful and happy facial expressions are reported in Nature 383 (1996), 812-5. The origins to violence are discussed in Nature 384 (1996), 35-6. On science and culture, Nature 384 (1996), 423. The results of the Third International Maths and Science Study show Singapore, Taiwan, South Korea and Japan have the highest scores, suggesting their teaching programs are doing the best, USA Today (21 Nov 1996), 1, 9D; NS (23 Nov 1996), 12; Science 274 (1996), 710-3. On methods to measure student ability, NS (23 Nov 1996), 49. Identical twins may have different trinucleotide repeats which puts them at different risks of schizophrenia and some other diseases, NS (23 Nov 1996), 19.

A letter reporting the views of genetic counselors in China is in Nature 384 (1996), 404. They found 95% of those who responded said that "people at high risk for serious disorders should not have children unless they use prenatal diagnosis and selective abortion", and 89% supported current Chinese laws on abortion for genetic abnormalities and non-medical indications. A rather bold statement is made at the end of the letter, saying this is the first survey to provide a basis for international discussion on ethics and genetics in China. In 1993, Lo et al. conducted surveys which are published in the (on-line also) book by Eubios Ethics Institute, Intractable Neurological Disorders, Human Genome Research and Society. Genset of France has negotiated an exclusive deal with the Chinese Academy of Medical Sciences to trawl through the DNA it has gathered in the genetic diversity and genome projects, NS (16 Nov 1996), 4. Also on the criticism of the Chinese law, NS (16 Nov 1996), 3; Nature 383 (1996), 204, 569; 384 (1996), 102.

Some German physicians thought the Council of Europe Bioethics Convention was not restrictive enough on genetics, Nature 384 (1996), 5. Also on eugenics, Nature 384 (1996), 127-8; Galton Institute Newsletter (Dec 1996), 5-8.

Results of a survey of female health maintenance organization enrollees are Tambor, ES. et al. "Genetic testing for breast cancer susceptibility: Awareness and interest among women in the general population", AJMG 68 (1997), 43-9. 51% of the respondents said they had heard of the discovery of the breast cancer gene, and 69% said that they were interested in being tested. On the ethics of screening, Humane Health Care International 12 (1996), 160-1. A survey of 28 obligate female carriers of the Fragile X gene is McConkie-Rosell, A. et al. "Carrier testing in the Fragile X syndrome: Attitudes and opinions of obligate carriers", AJMG 68 (1997), 62-9. They said they would have preferred to have known as children.

The UK Advisory Committee on Genetic Testing (ACGT) has produced a draft code of practice for companies selling genetic tests by post. The tests should be restricted to carrier test status, not affected persons. It is on line at < biosis/acgt/ACGT1.html> Regulation of gene tests is discussed in Science 275 (1997), 782.

Trends in incidence of Down syndrome and parental responses to affected pregnancies are changing, according to a paper presented by M.D. Macmillin and S.P. Pauker on November 1 at the American Society of Human Genetics Meetings in San Francisco, Geneletter (January 1997). At Harvard-Pilgrim Health Care, an HMO serving 300,000 people (85% Caucasian) in eastern Massachusetts, the incidence of pregnancies with Down syndrome has increased from 2 per 1,000 in 1992 to about 6 per 1,000 in 1995. This increase probably reflects an increase in the mean age of the obstetrical population. Since 1992, there has been a statistically significant trend toward carrying fetuses with Down syndrome to term. In 1992, almost 100% of fetuses prenatally diagnosed with Down syndrome were terminated; in 1994-95 this figure was 65%.

Results of a survey finding female doctors more liberal than males is Bouchard, L. & Renaud, M. "Female and male physician's attitudes toward prenatal diagnosis: A pan-Canadian survey", SSM 44 (1997), 381-92. Issues concerning ethical conduct and genetic mapping that were raised at the September 1996 Montreal meeting on DNA Sampling are discussed in, CMAJ 156 (1997), 257, 411-2. Glass KC, et al. "Structuring the review of human genetics protocols: gene localization and identification studies", IRB: A Review of Human Subjects Research 18 (1996), 1-9.

On ethics of gene testing, NatMed 3 (1997), 131; Nature 385 (1997), 477; Reilly, PR. et al. "Ethical issues in genetic research: disclosure and informed consent", NatGen 15 (1997), 16-20; AJPH 86 (1996), 1701. A survey of women's needs for information in genetic counseling, BMJ 314 (1997), 281-3. Non-directive counseling in the UK is revealed by a survey of practice, Michie, S. et al. "Nondirectiveness in genetic counseling: An empirical study", AJHG 60 (1997), 40-7, 17-20; NS (8 Feb. 1997), 7. A new book is Chadwick, R. et al., eds., The Right to Know and the Right Not to Know (Avebury 1997, 112p,m 33pds, ISBN 1-85972-424-8).

On eugenics and China, NatGen 15 (1997), 1-2; and on gene therapy and eugenics, NatGen 15 (1997), 234. Recently J. Watson said in interviews that there was nothing wrong in letting parents select children's characters using prenatal diagnosis, NS (22 Feb. 1997), 3. The genocide in Rwanda is documented in JAMA 277 (1997), 289-94. Zukier, H. "The essential "other" and the Jew: From anti-Semitism to genocide", Social Research 63 (1996), 1110-54. On attitudes to disabled, SSM 44 (1997), 549-50; and heritability, Nature 385 (1997), 34, 402-3. On language, culture and national identity, Social Research 63 (1996), 1065-80; and racism, NS (1 Feb. 1997), 49.

A new book is Peel, RA, ed. Marie Stopes Eugenics and the English Birth Control Movement (London: The Galton Institute 1997, 113pp.ISBN 0950406627). It is the proceedings of their 1996 conference. Letters on the BMJ's Nuremberg issue are BMJ 314 (1997), 439-40; also, Newsweek (30 Dec 1996), 18. Investigation of a Nazi anatomy textbook is underway, as discussed earlier, BMJ 314 (1997), 535. Officials from the University of Vienna have apologized for failing to investigate the university's involvement with Nazism.

A paper looking at paintings and disease is Emery, AEH. "Genetic disorders in portraits", AJMG 68 (1997), 334-9. On the rights of people with disabilities, CMAJ 156 (1997), 657; Espinel, CH. "Chou Ch'en's street character: facial deformity in the art of the Ming dynasty", Lancet 348 (1996), 1714-6. On traditions in an Indian village, SSM 44 (1997), 171-80. A letter on dopamine D2 receptors and personality traits is Nature 385 (1997), 590.

In general on ethical issues in genetics, BMJ 314 (1997), 384; AJHG 60 (1997), 248-60. Genetic origins of infidelity are discussed in Newsweek (30 Dec 1996), 62-5. On genetic counseling and offering unsolicited advice, AJMG 68 (1997), 485-6. A book review of Nee, JV, Physician to the Gene Pool, is AJMG 66 (1997), 476. On behavioural genetics, Beckwith J. & Alper, JS "Human behavioral genetics", The Genetic Resource 10 (No.2, 1996), 5-9. The complexity of genetic counseling in Huntington's Disease when new mutations may occur is discussed in AJMG 68 (1997), 281-6. Papers on predictive medicine and genetics in French are in Les Cahiers 10 (1997), 5-28.

A random sample of 2000 family physicians, all 565 obstetricians and all 62 registered midwives in the province of Ontario were surveyed in Carroll, JC. et al. "Ontario Maternal Serum Screening (MSS) Program: practices, knowledge and opinions of health care providers", CMAJ 156 (1997), 775-84. 97% of respondents stated that they were offering MSS to the pregnant women in their practices; 88% were offering it routinely to all pregnant women (87% of the family physicians, 90% of the obstetricians and 100% of the midwives). 92% of the respondents stated that they communicate positive results to their patients personally as soon as they are received; 23% did so for negative results. They show that practitioners continue to be concerned about maternal anxiety, high false-positive rates and the ethics of prenatal testing, see also, Evans, JA. "Screening for fetal anomalies: old habits, new challenges", CMAJ 156 (1997), 805-6. On risk and stigma, Gregory, R. et al. "Risk perceptions, stigma, and health policy", Health & Place 2 (1996), 213-20.

The members of the UK Human Genetics Advisory Commission are given in BME 125 (1997), 4. One of its tasks is to examine issues of cloning. On the ethics of using samples from dead persons, DeRenzo, EG. et al. "Genetics and the dead: Implications for genetics research with samples from deceased persons", AJMG 69 (1997), 332-4.

The results of a Mexican survey looking at counseling from internists, pediatricians, obstetricians and neurologists is Carnevale, C. et al. "Counselling following diagnosis of a fetal abnormality: Comparison of different clinical specialists in Mexico", AJMG 69 (1997), 23-8. The counseling is more likely to be directive in the groups except for obstetricians. A survey of understanding of risks is Denayer, L. et al. "Risk perception after CF carrier testing and impact of the test result on reproductive decision making", AJMG 69 (1997), 422-8.

A US study of physicians giving a genetic test for colon cancer found only 19% of patients received counseling before the test, 17% gave written informed consent, and 20% did not meet accepted criteria for testing; Giardiello, FM. et al. "The use and interpretation of commercial APC gene testing for familial adenomatous polyposis", NEJM 336 (1997), 823-7; Nature 386 (1997), 317; Lancet 349 (1997), 928. There is a strong need for more genetic counseling. In 32% of cases the physicians misinterpreted the results! The psychological needs of patients are surveyed in Michie, S. et al. "Genetic counseling: the psychological impact of meeting patients' expectations", JMG 34 (1997), 237-41; and for Huntington's disease, Lancet 349 (1997), 808-9.

Guidelines are recommended in Burke, W. et al. "Recommendations for follow-up care of individuals with an inherited predisposition to cancer. I. Hereditary nonpolyposis colon cancer", JAMA 277 (1997), 915-9; Burke, W. et al. "Recommendations for follow-up care of individuals with an inherited predisposition to cancer. II. BRCA1 and BRCA2", JAMA 277 (1997), 997-1003; Post, SG. et al. "The clinical introduction of genetic testing for Alzheimer disease. An ethical perspective", JAMA 277 (1997), 832-6. Breast screening ethics is discussed in Science 275 (1997), 782, 1549, 1721-4. Description of a protest that delayed the acceptance of guidelines for preimplantation diagnosis use by the Japan Society of Obstetrics and Gynecology is Nature Medicine 3 (1997), 371. A task force on genetic tests in the USA could not decide whether to ask for the FDA to review gene tests, Nature 386 (1997), 531. The NIH panel has recommended that pregnant women should have access to cystic fibrosis tests under health insurance, Nature 386 (1997), 752.

On another screening, Forrest ARW., "Ethical aspects of workplace urine screening for drug abuse", JME 23 (1997), 12-7.

The goals of the Nuffield Council of Bioethics latest project on genetics, mental disorders and ethics, are listed in BME 125 (1997), 4-5. They are also on-line as linked. The UK MRC is going to consult the public over funding for behavioural genetics studies in an attempt to appease research news that Robert Plomin proposes to identify genes which influence IQ, GenEthics News 16 (Jan-Mar 1997), 1-2. On the meme and genes in culture, NS (8 March 1997), 42-3; TREE 11 (1996), 453-7. A book review of DNA and Destiny: Nature and Nurture in Human Behavior is BMJ 314 (1997), 1137.

Concern about Chinese eugenics and the French company, Genset's deal to screen genes, is expressed in GeneWatch 10 (4-5) (Feb 1997), 2. The concern is mainly over the eugenics law, discussed in previous issues. See also SA (March 1997), 33-4. On race in Germany, Newsweek (21 April 1997), 22-7. On Nazi war crimes, Lancet 349 (1997), 886. On general ethics and genetics, NS (15 March 1997),42-3.

A random sample of 2000 family physicians, all 565 obstetricians and all 62 registered midwives in the province of Ontario were surveyed in Carroll, JC. et al. "Ontario Maternal Serum Screening (MSS) Program: practices, knowledge and opinions of health care providers", CMAJ 156 (1997), 775-84. 97% of respondents stated that they were offering MSS to the pregnant women in their practices; 88% were offering it routinely to all pregnant women (87% of the family physicians, 90% of the obstetricians and 100% of the midwives). 92% of the respondents stated that they communicate positive results to their patients personally as soon as they are received; 23% did so for negative results. They show that practitioners continue to be concerned about maternal anxiety, high false-positive rates and the ethics of prenatal testing, see also, Evans, JA. "Screening for fetal anomalies: old habits, new challenges", CMAJ 156 (1997), 805-6. On risk and stigma, Gregory, R. et al. "Risk perceptions, stigma, and health policy", Health & Place 2 (1996), 213-20.

The members of the UK Human Genetics Advisory Commission are given in BME 125 (1997), 4. One of its tasks is to examine issues of cloning. On the ethics of using samples from dead persons, DeRenzo, EG. et al. "Genetics and the dead: Implications for genetics research with samples from deceased persons", AJMG 69 (1997), 332-4.

The results of a Mexican survey looking at counseling from internists, pediatricians, obstetricians and neurologists is Carnevale, C. et al. "Counselling following diagnosis of a fetal abnormality: Comparison of different clinical specialists in Mexico", AJMG 69 (1997), 23-8. The counseling is more likely to be directive in the groups except for obstetricians. A survey of understanding of risks is Denayer, L. et al. "Risk perception after CF carrier testing and impact of the test result on reproductive decision making", AJMG 69 (1997), 422-8.

A US study of physicians giving a genetic test for colon cancer found only 19% of patients received counseling before the test, 17% gave written informed consent, and 20% did not meet accepted criteria for testing; Giardiello, FM. et al. "The use and interpretation of commercial APC gene testing for familial adenomatous polyposis", NEJM 336 (1997), 823-7; Nature 386 (1997), 317; Lancet 349 (1997), 928. There is a strong need for more genetic counseling. In 32% of cases the physicians misinterpreted the results! The psychological needs of patients are surveyed in Michie, S. et al. "Genetic counseling: the psychological impact of meeting patients' expectations", JMG 34 (1997), 237-41; and for Huntington's disease, Lancet 349 (1997), 808-9.

Guidelines are recommended in Burke, W. et al. "Recommendations for follow-up care of individuals with an inherited predisposition to cancer. I. Hereditary nonpolyposis colon cancer", JAMA 277 (1997), 915-9; Burke, W. et al. "Recommendations for follow-up care of individuals with an inherited predisposition to cancer. II. BRCA1 and BRCA2", JAMA 277 (1997), 997-1003; Post, SG. et al. "The clinical introduction of genetic testing for Alzheimer disease. An ethical perspective", JAMA 277 (1997), 832-6. Breast screening ethics is discussed in Science 275 (1997), 782, 1549, 1721-4. Description of a protest that delayed the acceptance of guidelines for preimplantation diagnosis use by the Japan Society of Obstetrics and Gynecology is Nature Medicine 3 (1997), 371. A task force on genetic tests in the USA could not decide whether to ask for the FDA to review gene tests, Nature 386 (1997), 531. The NIH panel has recommended that pregnant women should have access to cystic fibrosis tests under health insurance, Nature 386 (1997), 752.

On another screening, Forrest ARW., "Ethical aspects of workplace urine screening for drug abuse", JME 23 (1997), 12-7.

The goals of the Nuffield Council of Bioethics latest project on genetics, mental disorders and ethics, are listed in BME 125 (1997), 4-5. They are also on-line as linked. The UK MRC is going to consult the public over funding for behavioural genetics studies in an attempt to appease research news that Robert Plomin proposes to identify genes which influence IQ, GenEthics News 16 (Jan-Mar 1997), 1-2. On the meme and genes in culture, NS (8 March 1997), 42-3; TREE 11 (1996), 453-7. A book review of DNA and Destiny: Nature and Nurture in Human Behavior is BMJ 314 (1997), 1137.

Concern about Chinese eugenics and the French company, Genset's deal to screen genes, is expressed in GeneWatch 10 (4-5) (Feb 1997), 2. The concern is mainly over the eugenics law, discussed in previous issues. See also SA (March 1997), 33-4. On race in Germany, Newsweek (21 April 1997), 22-7. On Nazi war crimes, Lancet 349 (1997), 886. On general ethics and genetics, NS (15 March 1997),42-3.

The acceptance of cystic fibrosis testing by families is reported in Sorenson, JR. et al. "Acceptance of home and clinic-based cystic fibrosis carrier education and testing by first, second, and third degree relatives of cystic fibrosis patients", AJMG 70 (1997), 121-9. Of the 514 relatives, first, second and third degree relatives, 58% accepted. 67% who were offered education and testing in their homes accepted, while 45% accepted if asked in the genetic counseling clinic, in a study done in North Carolina, USA. The predictors of taking the test included education, income, gender, perceived chance of being a carrier, perceived chance of having a child who is a CF carrier. The US NIH has endorsed CF testing, BMJ 314 (1997), 1299; JAMA 277 (1997), 1507. The consensus panel called for insurance coverage of the tests. On stigma, BMJ 314 (1997), 1559-60. Decisions about prenatal diagnosis are discussed in Medical Decision Making 17 (1997), 42-55; and on decisions about masectomy after BRCA1/2 tests, NEJM 336 (1997), 1465-71.

On planning parenthood, CQHE 6 (1997), 100-5; and a review of a Catholic Bishops' Joint Committee on Bioethical issues report, JMG 34 (1997), 527. A book review of McGee, G. The Perfect Baby: A Pragmatic Approach to Genetics (Rowman & Littlefield Publishers Inc., 1997, ISBN 0-8476-8344-3) is NatMed 3 (1997), 691-2. A study showing women control reproductive patterns is Nielsen, BB. et al. "Reproductive pattern, perinatal mortality, and sex preference in rural Tamil Nadu, South India: community based, cross sectional study", BMJ 314 (1997), 1521-4. Excess female mortality was about one third of the perinatal mortality rate, being infanticide. Also on sex discrimination, Modern Law Review 60 (1997), 334-59. The UK public is concerned about gene testing by insurance companies, BMJ 314 (1997), 1552-3.

A study of the impact of testing upon 16 of 20 people who received tests with average of 6 years follow up, is Taylor, CA. & Myers, RH. "Long-term impact of Huntington disease linkage testing", AJMG 70 (1997), 365-70. There is some long risk of psychological impact in those at increased risk, but those with decreased risk do well. The use of mutation size to predict age of onset is discussed in AJHG 60 (1997), 1202-10. Several diseases were compared in a European study, DudokdeWit, AC. et al. "Psychological distress in applicants for predictive DNA testing for autosomal dominant, heritable, late onset disorders", JMG 34 (1997), 382-90. There may be impact of childhood testing on children and parents, Fanos, JH. "Developmental tasks of childhood and adolescence: Implications for genetic testing", AJMG 71 (1997), 22-8. This paper focuses on the needs for counseling associated with such testing, and the support services.

A report on the psychology of BRCA1 testing is Dudokdewit, AC. et al. "BRCA1 in the family: A case description of the psychological implications", AJMG 71 (1997), 63-71. There are now more scientific questions over the usefulness of the tests, Lancet 349 (1997), 1524 (and see Genetic Disease Marker section). However mastectomy does prevent breast cancer, JAMA 277 (1997), 1421-2. The needs of Canadian women were surveyed in Degner, LF et al. "Information needs and decisional preferences in women with breast cancer", JAMA 277 (1997), 1485-92; and on consent, Geller, G. et al. "Genetic testing for susceptibility to adult-onset cancer. The process and content of informed consent", JAMA 277 (1997), 1467-74, 1475-7; also NEJM 336 (1997), 1180-3, 1243-4. A related conference report is JMG 34 (1997), 346-8.

A list of previously unavailable military reports on human genetics is available through the use of the US Freedom of Information Act. You can get a list of [largely unpublished] military technical reports on human genetics and related topics. Here are some subject keywords with which you can obtain a LIST of several hundred military technical reports on human genetics and related subjects from the Defense Technical Information Center, a government agency. Keywords include: Human Genome Project, Human Genome, Genes, Genetics, Molecular Biology, Chromosomes, Chromosome Aberrations, Chromatin, Chromophores, Nuclei (Biology), DNA, RNA, Recombinant DNA, Cloning, Clone, Genetic Sequencing. The address is Defense Technical Information Center, Attn: DTIC-RSM [Kelly D. Akers, FOIA Manager], 8725 John J. Kingman Road, Suite 0944, Fort Belvoir, VA 22060-6128, USA (Tel: 703-767-9194).

Following the Goa meeting in India (see editorial) India's Dept. of Biotechnology has agreed to develop a framework for setting up an ethics panel on the impact of genetics, Nature 387 (1997), 836.

On the possibility to change human nature and crime there are 12 commentaries to a paper, Vila, B. "Human nature and crime control: Improving the feasibility of nurturant strategies", Politics & Life Sciences 16 (1997), 3-22, pp. 23-56 for commentaries. Letters on the Pernkopf Anatomy Atlas are in JAMA 277 (1997), 1122-4. On eugenics, BMJ 314 (1997), 1561; Nature 388 (1997), 13; Science 276 (1997), 892; Davis, PV. & Bradley, JG. "The meaning of normal", Perspectives in Biology and Medicine 40 (1997), 68-77; Rothwell, PM. et al. "Doctors and patients don't agree: cross sectional study of patients' and doctor' perceptions and assessments of disability in multiple sclerosis", BMJ 314 (1997), 1580-3; Neel, JV. "Looking ahead: Some genetic issues of the future", Perspectives in Biology and Medicine 40 (1997), 328-47. On intelligence and genetics, Nature 387 (1997), 743, 849-50; and disability, AJPH 87 (1997), 378-83. In general on diagnosis and ethics, Univ. Pennsylvania Center for Bioethics Newsletter 2 (3, Spring 1997), 3-4.

In addition to the paper by Melanie Rock on geneticization in this issue of EJAIB, another response is, Inclusion International. The Ethical Imperative of Human Rights and Human Diversity: Response to the Revised Preliminary Draft Declaration (December 1996) of a Universal Declaration on the Human Genome and Human Rights issued by UNESCO International Bioethics Committee. (International League of Societies for Persons with a Mental Handicap), 1997. There are also comments from Ernst Benda in Biomedical Ethics 2 (1, 1997). On the genetics era also see, Euroscreen 7 (Spring 1997), 5-8; and a conference report on HUGO HGM'97 in IAB News 5 (Spring 1997), 11-4.

The HUGO Ethics Committee comments on the Chinese Maternal and Infant Health-care law are in HUGO Digest (April 1997), 6-8. A new book in German is Doering, Ole, Technischer Forshritt und kulturelle Werte in China. Humangenetik und Ethik in Taiwan, Hongkong und der Volksrepublik China (Human Genetics and Ethics in China), Institute of Asian Affairs, University of Hamburg, 1997, 137pp., 28DM, ISBN 3-88910-186-0). A summary will appear in a later issue (Email:

Papers on testing dilemmas include: Burgess, MM. et al. "Dilemmas of anonymous predictive testing for Huntington Disease: Privacy vs. optimal care", AJMG 71 (1997), 197-201; see also 238-9. The participants found anonymity was a burden. Also, Eng, C. & Vijg, C. "Genetic testing: The problems and the promise", NatBio 15 (1997), 422-6; BMJ 315 (1997), 189-90; Zahed, L. & Bou-Dames, J. "Acceptance of first trimester prenatal diagnosis for the hemoglobinpathies in Lebanon", Prenatal Diagnosis 17 (1997), 423-8. 59% of couples were in favour, 18% were opposed and 23% were uncertain of doing the tests for moral or religious or economic reasons. A finding of sever limb deformities from uterine lavage for sex determination raises serious concerns about such tests, Prenatal Diagnosis 17 (1997), 1-3, 77-80.

A review of maternal and child health in China is BMJ 314 (1997), 1898-900. A paper looking at the duty of parents not to harm children genetically, Green, RM. "Parental autonomy and the obligation not to harm one's child genetically", JLME 25 (1997), 5-15. There are two commentaries on it, pp. 16-21. Letters on the work of Ernst Rudin and Nazi euthanasia links are in AJMG 74 (1997), 455-63. On the return of Swiss bank accounts to Jews, Newsweek (4 August, 1997), 38-9. On eugenics, Caulfield T. & Robertson G. Eugenic policies in Alberta: from the systematic to the systemic? Alberta Law Review XXXV (1996), 59-79. See also enforced sterilizations in Sweden, in Birth Control section. A debate on genocide in politics in East Timor is Rumney PNS., "Getting away with murder: Genocide and Western State Power", Modern Law Review 60 (1997), 594-608. A review of the Americans with Disability Act is California Law Review 85 (1997), 701-47. On reductionism in science, Science 277 (1997), 476-7.

A new book from the Sept 1996 DNA Sampling conference in Montreal, is Knoppers, BM. et al., eds., Human DNA: Law and Policy. International and Comparative Perspectives (Kluwer Law Int. 1997, ISBN 90-411-0452-6, 455pp.). It includes papers on the legal status of genetic material, consent and confidentiality, genetic epidemiology, genetic diversity, genetic screening and research, commercialization and sampling and banking procedures.

The question of directed counseling is found not to be unanimous even in the USA in Bartels, DM. et al. "Nondirectiveness in genetic counseling: A survey of practitioners", AJMG 72 (1997), 172-9. See also Kessler, S. "Psychological aspects of genetic counseling. XI. Nondirectiveness revisited", AJMG 72 (1997), 164-71; AJHG 61 (1997), 466-7. On 23 Sept. the UK Advisory Committee on Genetic testing (ACGT) was due to publish a Code of Practice, and on 29 Sept. the UK HGAC insurance working group was expected to release its reports. On informed consent in testing, JAMA 278 (1997), 821-2; and testing of adolescents, NEJM 337 (1997), 639-40. A discussion is Harper, PS. "What do we mean by genetic testing?", JMG 34 (1997), 749-52. A UK study found 77% men and 93% women at risk of cancer used genetic testing, JMG 34 (1997), 746-8. The reasons why Californian women want testing is Press, N. & Browner, CH. "Why women say yes to prenatal diagnosis", SSM 45 (1997), 979-89.

A paper on homosexuality research is Schuklenk, U. et al. "The ethics of genetic research on sexual orientation", HCR 27 (4, 1997), 6-13; see also SA (Oct. 1997), 146-7; NEJM 337 (1997), 645-6. On ethics of aiding deaf children to hear by Cochlear Implant Surgery, HCR 27 (4, 1997), 14-21; KIEJ 7 (1997), 231-52, 253-8. On genetic essentialism, Wolpe, PR. "If I am only my genes, what am I? Genetic essentialism and a Jewish response", KIEJ 7 (1997), 213-30. There are concerns among the Ashkenazi Jewish community over fears for misuse of genetic results, Nature 389 (1997), 315, 322. A review of Zallen, DT., Does it run in the family? A consumer's guide to DNA testing for genetic disorders (Rutgers Univ. Press 1997, ISBN 0-8135-2446-6), is in NatMed 3 (1997), 1044.

Hostility in type A personality is related to heart disease, BMJ 315 (1997), 379-80. Predictive testing is being conducted for retinoblastoma, AJHG 61 (1997), 279-81. Dilemmas of counseling Angelman families are reported in JMG 34 (1997), 651-5. A paper on the human side of genetic drift and the consequences of genetic disease is AJMG 71 (1997), 375-7. Several papers on cystic fibrosis are in Humane Health Care International 13 (2, 1997), 20-3. On disability and health, J. Rehabilitation (July 1997), 3-4; BMJ 315 (1997), 409-12. The history of disease in the 20th century is discussed in Nature 389 (1997), 345. A new journal is Community Genetics (S. Karger AG, PO Box, CH-4009, Basel, Switzerland; Email

As discussed in the Birth Control section above, eugenic sterilization has been revealed in many countries, especially Sweden, BMJ 315 (1997), 563; Nature 389 (1997), 9. France is also to review the cases, BMJ 315 (1997), 697. The Galton Institute is planning to publish a bibliography of the secondary literature on eugenics, and calls for any one to send papers on the subject to their general secretary, 19 Northfields Prospect, Northfields, London SW18 1PE, UK. A Nazi, John Rabe, living in Nanjing, who helped try to save Chinese persons in the Nanjing massacre put the toll at 60,000 dead, Japan Times (9 October 1997), 4. Some recent papers on genetics and ethics from SCOPE notes are in KIEJ 7 (1997), 299-318.

The methods of questionnaires and interviews to look at concerns are both used in Dukokdewit, AC. et al. "Distress in individuals facing predictive DNA testing for autosomal dominant late-onset disorders: Comparing questionnaire results with in-depth interviews", AJMG 75 (1998), 62-74. People at risk for neurodegenerative disorders (50% risk for Huntington disease, hereditary cerebral hemorrhage with amyloidosis) had higher anxiety and depression scores and more psychological complaints than did those for FAP, breast and ovarian cancer. From the interviews they found reporting high intrusion/high avoidance were more reflective about their emotions, suggesting that those reporting higher stress may be dealing with the risk whereas those with low stress may be unable to face the implications. On the variety of reactions to Huntington test results in a Swedish clinic, Wahlin, TBR. et al. "Reactions to predictive testing in Huntington disease: case reports of coping with a new genetic status", AJMG 73 (1997), 356-65. A decision against gene testing for Alzheimer's by the Stanford University Program in Genomics, Ethics and Society is Nature 389 (1997), 898; and a position paper by the US National Society of Genetic Counselors, on Late onset disorders, JAMA 278 (1997), 1217-20. A review paper is Holtzman, NA. et al. "Predictive genetic testing: From basic research to clinical practice", Science 278 (1997), 602-5.

Over-the-counter genetic tests are available in the UK, and the code of practice produced by the Advisory Committee on Genetic Testing (ACGT) is in BME 131 (1997), 5-6; discussed in Lancet 350 (1997), 969, 1013; NatMed 3 (1997), 1180. The US biotechnology company OncorMed has an exclusive license to do genetic tests based on BRCA2 from the UK Cancer Research Campaign, with ethical conditions including that non-profit organizations do not pay a license fee, people tested must be referred by an expert in hereditary cancer, and receive full counseling, Nature 390 (1997), 324; GenEthics News (Oct 1997), 5. The implications of Fragile X testing are discussed in van Rijn, MA. et al. "DNA testing for fragile X syndrome: Implications for parents and family", JMG 34 (1997), 907-11.

On genetic responsibility, Green RM. "Parental autonomy and the obligation not to harm one's child genetically", J. Law, Medicine & Ethics 25 (1997), 5-15; Holland, J. "Should parents be permitted to authorize genetic testing for their children?", Family Law Quarterly 31 (1997), 320-53. The US ELSI Task Force on Genetic Testing report of 1997 is on the Internet at was <>. A review of genetic laws is Casabona, CMR. "Genetics and the law", pp. 960-86 in International Encyclopedia of Laws (Kluwer Law Int. Pub., 1997). Movie reviews of GATTACA which discusses genetic enhancement are in NatGen 17 (1997), 260-2; Nature 390 (1997), 33; Science 277 (1997), 1753-4; and on USA public fears of genetics, NatGen 17 (1997), 363-4; the Gene-Shop, NS (8 Nov 1997), 56; and on an Australian project to enhance genetics knowledge, JMG 34 (1997), 831-7. On genetic counseling and prenatal tests, Lancet 350 (1997), 1643; BMJ 315 (1997), 1240-1; and a trial of sickle cell disease, Gaucher disease and CF is in Eng, CM et al. "Prenatal genetic carrier testing using triple disease screening", JAMA 278 (1997), 1268-72. On CF testing, NEJM 337 (1997), 997-9.

A former dental supply company has announced plans to sell predictive genetic tests for three serious late onset medical diseases as well as periodontal disease (Periodontal Disease (already on the market and being marketed to periodontists and dentists), Osteoporosis (1998), Coronary Artery Disease (1999), Diabetic Retinopathy in diabetics (1999)). The California company, now called Medical Science Systems, recently filed a prospectus with the US Securities and Exchange Commission. Which is on-line <>.

There was generally good test acceptance for cystic fibrosis in a Rochester, NY, USA program, Levenkron, JC. et al. "Carrier screening for cystic fibrosis: test acceptance and one year follow-up", AJMG 73 (1997), 378-86. Letters debating informing parents of the CF carrier status of the fetus is AJMG 73 (1997), 489-90. A survey of 10 informed consent forms in the USA is Durfy, SJ. et al. "Testing for inherited susceptibility to breast cancer: A survey of informed consent forms for BRCA1 and BRCA2 mutation testing", AJMG 75 (1998), 82-7. Communal response is discussed in Foster, MW et al. "Communal disclosure as a supplement to informed consent for genetic research", NatGen 17 (1997), 277-9.

A book review of Harper, P. & Clarke, A. Genetics, Society and Clinical Practice (Bios Scientific 1997, 20pds, ISBN 1859962068) is in NS (1 Nov 1997), 60 (a review of this book will appear in the next issue of EJAIB). Jackson, JF, Genetics and You (Humana Press, 1996, 92pp.) is in AJMG 73 (1997), 235. Reports from the plenary ethics session at the Vth World Congress of Psychiatric genetics are in AJMG 74 (1997), 593-4.

Several genetic traits have been found linked to fear conditioning in mice, NatGen 17 (1997), 250-1, 331-4, 335-7. On genetics of aggression, AJMG 74 (1997), 655-6; Psychiatric Clinics of North America 20 (1997), 301-22. A paper on determinism is Schmidt, K. "It was my genes, Guv", NS (8 Nov 1997), 46-50. On ethics of normalization, CQHE 6 (1997), 481-93. The hunt for mental disease genes is reviewed in NatGen 17 (1997), 127-9. On attention deficit hyperactivity, BMJ 315 (1997), 894-5. Male driven evolution is discussed in NatGen 17 (1997), 129-30, 182-9; and on sex differences, NatMed 3 (1997), 1291. There is higher incidence of birth problems in consanguineous marriages in Arab Israelis, JMG 34 (1997), 1000-2. On genetic counseling in Muslims, Lancet 350 (1997), 1035-6. A gene-culture coevolutionary model for brother-sister mating is in PNAS 94 (1997), 13046-50. On selfish or non-selfish genes, NS (25 Oct 1997), 28-32; PNAS 94 (1997), 14596-601; Nature 390 (1997), 223-4; Time (Jan 1998), 52-7.

A review from Finish abuses is Hemminki, E. et al. "Sterilization in Finland: From eugenics to contraception", SSM 45 (1997), 1875-84. France is investigating its cases, BMJ 315 (1997), 697. Fears of genetics are reviewed in Wertz, DC. "Society and the not-so-new genetics: What are we afraid of? Some future predictions of a social scientist", J. Contemporary Health Law & Policy 13 (1997), 299-346. Racism may return, AJPH 87 (1997), 1765-6; and a review is Pernick, MS. "Eugenics and public health in American history", AJPH 87 (1997), 1767-72. Also on eugenics, Lancet 350 (1997), 1331-2, 1560-1, 1785; NatMed 3 (1997), 1292-3; Nature 390 (1997), 36, 112, 457-8; BMJ 315 (1997), 1116. The US plans to give US$29 to a new fund to help needy victims of Nazi persecution, Reuters (2 Dec 1997). On cultural identification and perceptions of disability, J. Rehabilitation (Oct 1997), 9-15, 38+.

The results of a study on 288 persons in the USA finding that there was no difference in knowledge, anxiety or other affects on receiving counseling at home or in the clinic is, Chevront, B. et al. "Psychosocial and educational outcomes associated with home- and clinic-based pretest education and cystic fibrosis carrier testing among a population of at-risk relatives", AJMG 75 (1998), 461-8. A philosophical analysis based on the argument of self-determination is Raikka, J. "Freedom and a right (not) to know", Bioethics 12 (1998), 49-63. On breast cancer tests, Frizzley, JK. "Ethical issues in breast cancer susceptibility testing", Health Law Review 6 (1998), 14-23; Kodish, E. et al. "Genetic testing for cancer risk. How to reconcile the conflicts", JAMA 279 (1998), 179-81. On testing for Fragile X, Nelkin, D. "The social dynamics of genetic testing: The case of Fragile-X", Medical Anthropology Quarterly 10 (1997), 537-50; and general, Holtzman, NA. "Bringing genetic tests into the clinic", Hospital Practice (15 Jan 1998), 107-28. Genetics for nurses is discussed in Nursing Outlook 45 (1997), 278-9.

The results of the Wertz and Fletcher survey of medical geneticists for Mexico are in Carnevale, A. et al. "Attitudes of Mexican geneticists towards prenatal diagnosis and selective abortion", AJMG 75 (1998), 426-31; with a commentary, Wertz, DC. "Genetic counseling in Mexico", AJMG 75 (1998), 424-5. The geneticists did not have great familiarity with prenatal diagnosis, and there were mixed attitudes to selective abortion, and there was directive counseling often suggested. On Chinese results, Mao X. & Wertz DC., "China's genetic services providers' attitudes towards several ethical issues: a cross-cultural study", Clin Genet. 52 (1997), 100-9. Also on ethics of genetic counseling, CQHE 7 (1998), 97-100. A paper finding some lack of informed decision making is Atkin, K. & Ahmad, WIU. "Genetic screening and haemoglobinopathies: Ethics, Politics and Practice", SSM 46 (1998), 445-58.

Japanese victims of the 1948 Eugenic protection law who were sterilized are hoping for an apology from the government. About 1 million persons were sterilized between 1948 and 1996. Australia has carried out more than 1000 illegal sterilizations of intellectually disabled since 1992, Lancet 351 (1998), 44. The Saudi Arabian government has decreed that foreigners wishing to marry Saudi Arabian nationals must produce a medical certificate showing that they are not carriers of genetic or infectious diseases (finer details from readers would be welcome!). Patients with trisomy 8 mosacicism can have children, and they may have normal intelligence and not be malformed, AJMG 75 (1998), 382-5.

On possibilities for psychological gene markers, Lancet 350 (suppl. III, 1997), 1. On the creation of homosexual identity in law, Modern Law Review 61 (1998), 102-14; and on public opinion, Public Opinion Quarterly 61 (1997), 477-507. A series of papers on sex education are in J. Moral Education 26 (1997), 253-62.

Book Review: Harper, Peter S. & Clarke, Angus J. Clarke, Genetics, Society and Clinical Practice (Bios Scientific Publishers, 1997, 253pp. ISBN 1-85996-206-8, Bios homepage <>). - D.Macer

This book includes 18 chapters written by one or the other of the co-authors, and covers the main clinical areas of concern. First it defines genetic testing, then looks at the particular ethical issues raised in its use by children, for Huntington's disease, and over-the counter experience for cystic fibrosis. General issues of insurance, population testing for carrier status, newborn and prenatal testing are all considered in separate chapters. The third section looks at general issues in genetics, such as public health, privacy, counseling, then touches intelligence and race.

In the final section three so-called abuses of genetics are discussed by P. Harper, the case of Hallervorden and Spatz, abuse of genetics in Huntington's disease and then correspondence with persons in China over the Chinese eugenics law. The authors attack China and could be said to represent the British Genetics Society views that led to a boycott of the genetics Conference in Beijing being called for. While it is good to know the authors views, and that clinical geneticists are strongly concerned about abuses of genetics, that last chapter lacks some international perspective on ethics that has led others to be more reserved. However, as I said, one gets the impression that abuses of genetics would not happen so frequently if geneticists would take this academic study on ethics to heart. There is a good range of references given and an index.

On the ethics of cancer susceptibility testing by the Cancer Genetic Studies Consortium of NIH, JLME 25 (1997), 243-51, 252-5. A summary of the US ELSI Taskforce report on genetic testing is in Human Genome News 9 (1-2), 14. CF testing appears to be cost effective, Vinzileos, AM et al. "A cost effectiveness analysis of prenatal carrier screening for cystic fibrosis", O&G 91 (1998), 529-34. The impact of testing is reviewed in Marteau, TM & Croyle, RT. "Psychological responses to genetic testing", BMJ 316 (1998), 693-6; and Holtzman, NA. & Shapiro, D. "Genetic testing and public policy", BMJ 316 (1998), 852-6. On counseling for familial hypertrophic cardiomyopathy, JMG 35 (1998), 183-8.

A Finnish study is Santalahti, P. et al. "Women's decision-making in prenatal screening", SSM 46 (1998), 1067-76. Several papers on the dilemmas of amniocentesis are in Humane Health Care International 13 (3, 1997), 87-94. On disability rights and selective abortion, Health Law Review 6 (1998), 12-9. A case of a normal trisomy 18 father who fathered a normal baby girl is in AJMG 76 (1998), 365-6. On social adjustment of adult males with muscular dystrophy, AJMG 81 (1998), 4-12.

The legal debate in Canada on compensation for victims of forced sterilization is reported in Lancet 351 (1998), 892. A new book is Peel, RA. Essays in the History of Eugenics (London: The Galton Institute 1998, 233pp.). A discussion of eugenics is in GenEthics News 22 (Feb./March 1998), 6-8; J. Contemporary Health Law & Policy 13 (1996), 1-25; Nature 392 (1998), 771. The Chinese eugenics debate is discussed in Nature 392 (1998), 109. The Catholic church apology for WWII policy and the Holocaust is reviewed in Newsweek (30 March 1998), 49. A coalition will look at ethnic concerns in genetics, Nature 392 (1998.), 428. Review of a report on poor results for cleft lip and palate repair is, BMJ 316 (1998), 723. On how Mexican American diabetes patients' causal stories relate to their treatment behaviours is SSM 46 (1998), 959-69.] A gene called hairless may be related to baldness in humans as well as mice where it was found, NS (7 Feb. 1998).

A new report from public consultation is Welsh Institute for Health and Social Care (Fax Int+44-1443-483079), Report of the Citizen's Jury on Genetic Testing for Common Disorders, 35pp., 1998. The jury of 16 persons deliberated on questions of genetics and ethics and has made 28 recommendations, the last of which is to keep the public informed. They had four days in which witnesses were introduced and questioned on the range of opinions and facts. Other recommendations were on the themes of equity of access, acheiving a right balance of funding, improving genetics in primary health care, ensuring adequate counselling, maintaining a regulatory framework and expanding public and professional knowledge.

A report and ethical analysis is Tannsjo, T. "Compulsory sterilization in Sweden", Bioethics 12 (1998), 236-49. On gynecology and forced sterilization and asylum in the USA from China, Lancet 351 (1998), 1729+. A book review on early East European immigrants into USA is NEJM 338 (1998), 1235. A survey of 1159 Finnish persons is Jallinoja, P. et al. "Attitudes towards genetic testing: Analysis of contradictions", SSM 46 (1998), 1367-74. A paper on the issue of racism is Beckwith, J. "The responsibility of scientists in the genetics and race controversies", pp. 83-94 in Plain Talk about the Human Genome Project, eds. E. Smith & W. Sapp (Tuskegee University Press, AL, 1997). A paper on race, class and violence is Int. J. Health Sciences 28 (1998), 349-72. Also on racial discrimination, BMJ 316 (1998), 1977.

A series of papers on ethics and genetic counseling and testing are in KIEJ 8 (No. 2, June 1998), 111-200. A paper that argues that the only ethically defensible way to alter the genes of future people is "testing and selective termination of genetically defective embryos" is Glannon, W. "Genes, embryos and future people", Bioethics 12 (1998), 187-211. Papers looking at genetic counseling, Burgess, MM. et al. "Bioethics for clinicians: 14. Ethics and genetics in medicine", CMAJ 158 (1998), 1309-13; Bernhardt, BA. et al. "Prenatal genetic testing: Content of discussions between obstetric providers and pregnant women", O&G 91 (1998), 648-55. Recommendations on the education and training of genetic nurses and counselors in the UK are in JMG 35 (1998), 410-2. A discussion of the UK Code of practice for direct public access gene tests is JMG 35 (1998), 443-5.

Jewish leaders have meet with NIH staff in efforts to prevent stigmatization of women who have high risk of breast cancer genes, Nature 393 (1998), 851. Calls are being made for more countries to pass laws to prevent Holocaust denials, as a campaign to deny the Holocaust is expanding using the Internet, Japan Times (29 June 1998), 8. Alternatives to treatment of breast cancer like tamoxifen and raloxifene may discourage more from seeking testing, NatMed 3 (1997), 647.

A series of papers on the psycho-social aspects of dwarfing (nonlethal chondrodysplasias) are in AJMG 78 (1998), 1-35. On genetics and ELSI in public, NatMed 3 (1997), 541. On development of altruism, Science 280 (1998), 2070-1; and a book review of Baby Wars, NS (9 May 1998), 50.

A discussion of the debate on Chinese eugenics and the law on maternal and infant health is MacLeod, P. & Fraser, C. "Forget cloning sheep and pay attention to China", CMAJ 159 (1998), 153-5. On determinism and the mass-media portrayals of genetics are in AJHG 62 (1998), 979-84. Also, Alper, JS. "Genes, free will, and criminal responsibility", SSM 46 (1998), 1599-611. The application of the Americans with Disabilities Act to persons with psychiatric disorders is discussed in The Millbank Quarterly 76 (1998), 5-23. A study suggesting that among non-substance abusers (including alcohol) the frequency of violence among persons with psychiatric disorders is the same as those not identified with a problem, Science News 153 (1998), 309. Book reviews of Gay Science are NEJM 338 (1998), 1477; NS (21 Feb. 1998), 47. A related paper is Neu, J. "Sexual identity and sexual justice", Ethics 108 (1998), 586-96.

A review is D. Macer, "Ethics and Prenatal diagnosis", pp. 999-1024 in Milunsky, A., ed. Genetic Disorders and the Fetus. Diagnosis, Prevention, and Treatment. 4th edition (John Hopkins University Press 1998). A book review of Genetics, Society and Clinical Practice, NatMed 4 (1998), 857-8. Other papers on genetic screening are Henn, W. "Predictive diagnosis and genetic screening: Manipulation of fate?", Perspectives in Biology & Medicine 41 (1998), 282-9. A study of women who refuse tests is Press, N. & Browner, CH. "Characteristics of women who refuse an offer on prenatal diagnosis: Data from the California maternal serum alpha fetoprotein blood test experience", AJMG 78 (1998), 433-45. The factors included never having an abortion before, Spanish-speaking Latino women and high religiosity.

The effectiveness of genetic testing is discussed in BMJ 317 (1998), 417. On women's perception of risk, BMJ 317 (1998), 542. Communication of breast cancer risks and benefits are reviewed in 58 pamphlets in BMJ 317 (1998), 263-4; also see methodology section. The Health Council of the Netherlands report on DNA diagnostics in health care is summarized in Network 13 (August 1998), 3-4. The US will be making a body to recommend on ethics of genetic testing, Nature 394 (1998), 612.

Spain has drafted a new law on "voluntary" sterilization for people with mental disabilities, Lancet 352 (1998), 124. The long history of inbreeding has increased risk of spontaneous abortion in Pakistan, Ann. Hum. Genet. 62 (1998), 147-57. The survival of children with Down syndrome in South America is reviewed in AJMG 79 (1998), 108-9. A book review of Gay Science is in JAMA 279 (1998), 1664-5. A historical review is Galton, DJ. & CJ., "Francis Galton: and eugenics today", JME 24 (1998), 99-105. Swiss and Austrian banks are returning Jewish gold that was taken by Nazis. A discussion of race is Andreason, RO. "A new perspective on the race debate", Brit. J. Phil. Sci. 49 (1998), 199-225.

There was debate on eugenics and China's Maternal and Infant Health Care Law at the 18th International Congress of Genetics in China in August, Science 281 (1998), 1118-9; Nature 394 (1998), 707, 711; and the statement is included below. The Symposium on ELSI of Genetic Research was attended by about 100 participants and the Workshop on Science and Ethics of Eugenics by about 150. Summary of Workshop on Science & Ethics of Eugenics (August 12, 1998, Beijing, China):

Countries share many ethical principles based on the will to do good and not harm. These principles can be applied in many different ways. New genetic technology should be used to provide individuals with reliable information on which to base personal reproductive choices, not as a tool of coercive public policy. Informed choice should be the basis for all genetic counseling and advice on reproductive decisions. Genetic counseling should be for the benefit of the couple and their family: it has minimal effect on the incidence of deleterious alleles in the population. The term eugenics is used in so many different ways as to make it no longer suitable for use in scientific literature. In formulating policy on genetic aspects of health, international and interdisciplinary communication should be carried out at all levels. It is the responsibility of policy makers concerned with genetic aspects of human health to seek sound scientific advice. It is the responsibility of geneticists to educate physicians, decision-makers and the general public in genetics and its consequences to health.

A position statement on the ethics of genetic testing is Council on Ethical and Judicial Affairs, American Medical Association, "Multiplex genetic testing", HCR 28 (July 1998), 15-21. A comparison of information in CF screening pamphlets is AJHG 63 (1998), 1181-9.

A study of decision making is Kramer, RL. et al. "Determinants of parental decisions after the prenatal diagnosis of Down syndrome", AJMG 79 (1998), 172-4. In the US study in Michigan, 87% of 145 women decided to have an abortion of a fetus with trisomy 21, with a tendency for older women and women earlier in pregnancy to chose an abortion. A study in Japanese following interviews with 22 couples (21 pregnant women and 5 husbands) found that the factors influencing the decision to undergo amniocentesis were husband's attitude, understanding of Down syndrome or the handicapped, experience of abnormal pregnancy, physician's attitude toward amniocentesis, Tsukuamoto, Y. & Kami, K. "The pilot study on the essential factors in decisionmaking of those undergoing to the examination of genetic amniocentesis", Bioethics (in Japanese) 8 (1998), 52-7.

A discussion of ethics of deafness is in Tucker, BP. "Deaf culture, cochlear implants, and elective disability", HCR 28 (July 1998), 6-14; Middleton, A. et al. "Attitudes of deaf adults toward genetic testing for hereditary deafness", AJHG 63 (1998), 1175-80. Some deaf persons chose not to have the implants. Computer-based training for treatment of partial blindness is reviewed in NatMed 4 (1998), 1083-7. Blind people can track sounds better, Nature 395 (1998), 278-80; Science News 154 (1998), 180. Efforts to give equal chances to disabled scientists are discussed in Science 281 (1998), 36-7.

Several short papers on eugenics are in Galton Institute Newsletter 30 (1998), 4-8. Most geneticists in China do not have fears of the so-called eugenic measures, NS (24 Oct. 1998), 3, 18; also shared by some other countries, NatMed 4 (1998), 1096. Between 1948-1996 16,500 people in japan have been sterilized against their will, Tsuchiya, T. "Eugenic sterilizations in Japan and recent demands for an apology: A report", Newsletter of the Network on Ethics and Intellectual Disability 3 (Fall 1997), 1-4. Germany is setting up a fund for psychological harm caused by the Holocaust (to survivors), Lancet 352 (1998), 718. On IQ tests, Nature 396 (1998), 34-5. More of Anne Frank's dairy has been reported, Time (5 Oct. 1998), 56. Jews and medicine are the subject of a book review in JAMA 280 (1998), 1109-10. On race, AJPH 88 (1998), 1297-1313.

A discussion and critique is Schuklenk, U. & Broky, RA. "Biomedical research on sexual orientation: Researchers taking our chances in homophobic societies", Monash Bioethics Review 17 (Oct. 1998), Ethics Committee Supplement 2-9. It was only 1973 that the American Psychiatric Association voted to delete homosexuality from its list of mental disorders, JAMA 280 (1998), 497-9. Mothers of sheep and goats determine species sexual preferences of goat and sheep, Nature 395 (1998), 229-30. On abuse of gay persons, Time (26 Oct. 1998), 36-40; California Law Review 86 (1998), 1131-68; and character abuse associated with moral blame, University Chicago Law Review 65 (1998), 975-99. On twin research, Nature 392 (1998), 34-5.

On the use of marker segregation in breast/ovarian cancer counseling, AJMG 79 (1998), 175-83; Also Knoppers BM (ed): Socio-Ethical Issues in Human Genetics, Cowansville: Les Editions Yvon Blais, 1998; Knoppers BM, Godard B: Ethical and legal perspectives on inherited cancer susceptibility. pp. 30-45 in Foulkes W, Hodgson S (eds): Inherited Susceptibility to Cancer: From Molecules to Ethics. Cambridge: Cambridge University Press, 1998. A series of papers on ethical issues in Alzheimer's disease are in J. Clinical Ethics 9 (1998), 13-22, 23-34, 35-48, 71-80; also Fisk JD. et al: "Ethical guidelines of the Alzheimer Society of Canada", Can J Neurol Sci 25 (1998), 242-8; There are numerous ethical problems emerging in genetic research, CMAJ 159 (1998), 1160; also Burke, W. et al. "Hereditary hemochromatosis. Gene discover and its implications for population-based screening", JAMA 280 (1998), 172-8. On the risks to subjects in human genetics research, AJHG 63 (1998), 682-5; Nature 392 (1998), 14. The Nuffield Council has urged caution for mental disease risk screening, Nature 395 (1998), 309, 317, 836. A series of papers on stigma and mental disease are in Lancet 352 (1998), 1004-5, 1048-59; BMJ 317 (1998), 763-4. On late onset genetic disease, BMJ 317 (1998), 744-7.

The ethics of research are debated in Schuklenk, U. et al. "The ethics of genetic research on sexual orientation", Reproductive Health Matters 6 (No. 12, Nov 1998), 134-3; 144-9. Defensive mechanisms may be the origin of some homophobia, Lock, J. & Kleis, B. "Origins of homophobia in males. Psychosocial vulnerabilities and defense development", Amer. J. Psychotherapy 52 (1998), 425-36. There is also homophobia in medicine, BMJ 317 (1998), 1535; JAMA 280 (1998), 1717-8. On gender discrimination, NEJM 339 (1998), 1402. The question of defining panic and phobic anxiety phenotypes is discussed in Amer. J. Psychiatry 155 (1998), 1147-51, 1152-62.

Determinism is discussed in Rose, SPR. "Neurogenetic determinism and the new euphenics", BMJ 317 (1998), 1707-8. A paper on eugenics is in Splice 5 (No. 2, Jan 1999), 4-5. There have been an increasing number of claims on Swiss banks, some bogus, about damages from the Holocaust thefts, International Herald Tribune (5 Dec. 1998), 6. Theories of race and culture are discussed in BMJ 317 (1998), 1381-4; and DNA studies have challenged any idea of racial boundary, Science 282 (1998), 654-5.

Loss of aggression can be successful for ants, Holway, DA. et al. "Loss of intraspecific aggression in the success of a widespread invasive social insect", Science 282 (1998), 949-51. On the role of altruism, NS (2 Jan. 1999), 52-5. Extracts from the UK House of Commons S&T Committee report on Regulating Human Genetics are in IJB 9 (No. 3, 1998), 121-5. Excerpts from the Nuffield Council report on screening mental disorders and genetics are in BME 143 (1998), 10-1; and comments in Lancet 352 (1998), 1788. A gene called Clock may determine early-risers and late-risers, Science News 154 (1998), 196. On genes and behaviour, NS (2 Jan. 1999), 101. A review of genetics in China is Nature 396 (1998), 303-6; Nature 396 (1998), 307. On genetics and ethics in general, Newsweek (4 Jan. 1999), 46-7. Intelligence is increasing by score, but one wonders if we are really getting smarter, SA (Jan. 1999), 37-8.

Papers on genetic counseling include: Armstrong, D. et al. "Revealed identity: A study of the process of genetic counselling", SSM 47 (1998), 1653-8; Lisker, R. et al. "Mexican geneticists' opinions on disclosure issues", Clinical Genetics 54 (1998), 321-9; Trippitelli, CL. et al. "Pilot study on patients' and spouses' attitudes toward potential genetic testing for bipolar disorder", Amer. J. Psychiatry 155 (1998), 899-904; J. Medicine & Philosophy 23 (1998), 234-273. BRCA1 tests can heighten anxiety, Science News 154 (1998), 316.

Theories of disability are discussed in BMJ 317 (1998), 1446-9. A book review on disability movements is JAMA 280 (1998), 1456-7; and a book review of Hamer, D. & Copeland, P. Living with our genes (Doubleday, 1998) is NatMed 4 (1998), 1325-6. Individual gene screening will help decide what are the most appropriate drugs, NS (14 Nov. 1998), 32-6.

A paper on the process of decision making in genetic counseling is Resta, RG. "Just watching", AJMG 83 (1999), 1-2. A survey of 65 parents with an affected child in the USA is reported in McConkie-Rosell, A. et al. "Parental attitudes regarding carrier testing in children at risk for Fragile X syndrome", AJMG 82 (1999), 206-11; and from the UK a case is JMG 36 (1999), 167-70. The parents wanted children to have knowledge of their carrier status before sexual activity and marriage. A special issue of Health Law Journal 6 (1998), 301pp. focuses on "Pediatric genetics: An evolving legal and ethical framework", with 11 papers on the subject. On the issue of recontacting patients about research advances, Fitzpatrick, JL. et al. "The duty to recontact: Attitudes of genetic service providers", AJHG 64 (1999), 852-60.

The commercialization of tests raises issues as seen in Cho MK. et al. "Commercialization of BRCA1/2 testing: Practitioner awareness and use of a new genetic test", AJMG 83 (1999), 157-63. This survey in the USA from the University of Pennsylvania Genetics Diagnostics laboratory found 70% of doctors who had ordered a test for a patient had then had a patient decline the test, which they thought was due to a fear of loss of confidentiality. Also 28% of those who had ordered a test had no access to genetic counseling despite the requirement to have that with the supplier's conditions. There is also a discussion in EuroScreen 10 (Autumn 19998), 1-5. Several papers on breast cancer genes and ethics are in GeneWatch 11 (Jan 1999), 8-15; AJHG 64 (1999), 943-8; Cancer Genet. Cytogenet. 109 (1999), 91-8; Health Law Review 7 (No. 3, Winter 1999), 14-6. There are differences in clinical recommendations for women at increased risk of breast cancer in France and USA, Lancet 353 (1999), 919-20. On presymptomatic testing, NatMed 5 (1999), 372.

Several papers on ethics of genetics are in JLME 26 (no. 3, 1998), 181-224. A book review of J. Burley, The Genetic Revolution and Human Rights: The Oxford Amnesty Lectures (1998) by HT. Shapiro is NatBio 17 (1999), 400. A method for decision-making is White, MT. "Making responsible decisions. An interpretive ethic for genetic decision-making", HCR 29 (No. 1, Jan. 1999), 14-21. The UK Advisory Committee on Genetic Testing advice on Genetic Research and Ethics to UK health care ethics committees is in BME 145 (Feb. 1999), 21-24. On the potential for genetic discrimination from DNA chips, JME 25 (1999), 200-3.

The overall risk of birth defects in children of women with birth defects is 4%, not as high as expected, NEJM 340 (1999), 1108. A comment on who should be offered prenatal diagnosis and 35 year age limits is AJPH 89 (1999), 160-3. A statement on eugenics from the Board of Directors of the ASHG, "Eugenics and the misuse of genetic information to restrict reproductive freedom", AJHG 64 (1999), 335-8. On Chinese genetics and ethics, NatMed 5 (1999), 247. Several papers on disability include SSM 48 (1999), 977-88, 1173-87; JAMA 281 (1999), 595-6. Parents of people with Down's syndrome in the UK may be receiving suboptimal care because of the condition, BMJ 318 (1999), 687. A call for clinical trials to improve Down's syndrome expression is Lancet 353 (1999), 1064-5. On sexism and racism in preconceptive trait selection, F&S 71 (1999), 415-7.

Further information is needed before carrier CF testing will be able to be offered by most US obstetrician-gynecologists, O&G 93 (1999), 581-4. Ethical issues are discussed in Mennuti, MT. et al. "Screening for cystic fibrosis carrier state", O&G 93 (1999), 456-61. A recent book on the issue is Sarkar, S. Genetics and Reductionism (Cambridge University Press 1998, ISBN 0-521-63146-7 246pp.); and papers on reductionism in general are in Science 284 (1999), 79-109. On genetic determinism, NatGen 21 (1999), 362; and on memes, NS (13 March 1999), 3, 40-42; (20 March 1999), 43; Nature 398 (1999), 767-8. A book review of HJ. Eysenck, Intelligence: A New Look (Transition Publishers, New Brunswick, NJ, 1998, 227pp.) is Galton Institute Newsletter (March 1999), 6-8. A book review of The Biology of Violence is NS (27 Feb. 1999), 47. On the Holocaust, NEJM 340 (1999), 574.

There has been objections to transfer of gene samples from patients to the deCode company by Icelandic physicians, NS (9 Jan. 1999), 13. deCODE looks forward as database law passes, NatBio 17 (1999), 127, 407. See also Science 283 (1999), 13, 487. A need for genetic counseling in United Arab Emirates because of high frequency of congenital malformations, Ann Hum Genet. 62 (1998), 411-8. A survey in the UK on genetic counseling by non-geneticists is JMG 36 (1999), 350-1.

A study on the reporting of Down syndrome is Yamada, T. et al. "Recent trends in the prevalence of Down syndrome in Japan, 1980-1997", AJMG 85 (1999), 340-5. It noted no decline in birth because of increased maternal age. It also suggested that there is something unique in the bioethics because only 1% of advanced age pregnancies have amniocentesis. However, the editor disagrees, as results of surveys support, and the lack of services is the reason why so few pregnant mothers are offered the option of screening. On ethics, Goodey, C. et al. "The ethical implications of antenatal screening for Down's syndrome", BME 147 (1999), 13-17. A study of counseling found that even if male physicians gave longer consultation times female patients were generally more satisfied with female physicians, O&G 93 (1999), 635-41. A US study of genetics knowledge by obstetrician's found serious deficits, O&G 93 (1999), 642-7.

A study has found an absence of linkage of linkage of male homosexuality with microsatellite markers at Xq28, thus contradicting the idea of a so-called "gay gene", Science 284 (1999), 571, 665-7. A paper on genetic determinism is Holdrege, C., "Genes and life: The need for qualitative understanding", In Context. The Newsletter of the Nature Institute 1 (Spring 1999), 11-5. Also on ethics and genetics, BMJ 318 (1999), 1153.

The risk of suicide in Huntington disease is discussed in Bird, TD. "Outrageous fortune: The risk of suicide in genetic testing for Huntington disease", AJHG 64 (1999), 1289-92; Almqvist, EW. et al. "A worldwide assessment of the frequency of suicide, suicide attempts, or psychiatric hospitalization after predictive testing for Huntington disease", AJHG 64 (1999), 1293-304. Not many family members use cancer gene tests is Lerman, C. et al. "Genetic testing in families with hereditary nonpolyposis colon cancer", JAMA 281 (1999), 1618-22. The WHO "Proposed International Guidelines on Ethical Issues in Medical Genetics and Genetics Services" are on the Internet at <>, Nature 399 (1999), 297.

On intelligence and genes, Science 284 (1999), 589. A Nazi war crime trial has recently began in Austria, Lancet 353 (1999), 1421. New findings in the genetics of alcoholism are reported in JAMA 281 (1999), 1875-6. The WMA has opposed the Icelandic gene database, BMJ 318 (1999), 1096. Also on Icelandic genetics, NatBio 17 (1999), 517. A call to let deaf children chose whether to have cochlear implants is NS (24 April 1999), 52. The use of disability terminology in the media differs between Canada and Israel, SSM 48 (1999), 1395-405.

A software review of an educational CD-ROM "Counseling by Computer: Breast Cancer Risk and Genetic Testing" (University of Wisconsin - Madison 1998) is in AJMG 86 (1999), 93-4. There needs to be good quality counseling, Harris, R. et al. "National confidential enquiry into counseling for genetic disorders by non-geneticists: general recommendations and specific standards for improving care", Brit.J.O&G 106 (1999), 658-63. On informed consent, Goldworth, A. "Informed consent in the genetic age", CQHE 8 (1999), 386-400; Takala, T. "The right to genetic ignorance confirmed", Bioethics 13 (1999), 288-93; Anderson, G. "Nondirectiveness in prenatal genetics: Patients read between the lines", Nursing Ethics 6 (1999), 126-36; Wilcke, JTR. et al. "Transmitting genetic risk information in families: Attitudes about disclosing the identity of relatives", AJHG 65 (1999), 902-9; Markens, S. et al. "Because of the risks: how US pregnant women account for refusing prenatal screening", SSM 49 (1999), 359-69; Biesecker, BB. & Marteau, TM. "The future of genetic counseling: an international perspective", NatGen 22 (1999), 133-7; Nature 401 (1999), 15-6.

Negative impacts from results were not shown in Senior, V. et al. "Will genetic testing for predisposition for disease result in fatalism? A qualitative study of parents responses to neonatal screening for familial hypercholesterolaemia", SSM 48 (1999), 1857-60. The results may not be clear, as in, Syngal, S. et al. "Interpretation of genetic test results for hereditary nonpoluposis colorectal cancer", JAMA 282 (1999), 247-53. On community interaction, JME 25 (1999), 335-9. On psychosocial evaluation of children testing, JMG 36 (1999), 615-20. Counseling for breast cancer is discussed in Lancet 353 (1999), 2176-7.

A new book is Ole Doering (ed.) Chinese Scientists and Responsibility: Ethical issues of Human Genetics in Chinese and International Contexts, Mitteilungen des Instituts fur Asienkunde No. 314, Hamburg, 1999, 257 pp. ISBN 3889102271; 38,- DM).

Papers on the theme of racism and science in French are in Les Cahiers No. 20 (July 1999), 3-42. Ethical issues in eugenics are discussed in Science and Engineering Ethics 5 (1999), 383-94; GeneWatch 12 (June 1999), 1-10; BMJ 319 (1999), 435-8. Euphenics is discussed in BMJ 318 (1999), 1488-9. Nazi research on cancer was considered advanced, NEJM 340 (1998), 1931; 341 (1999), 380-1; NS (19 June 1999), 48-50. Papers on disability are in BMJ 319 (1999), 756-64; Lancet 354 (1999), 87-8, 111-5, 693. On adverse effects of being a carrier, Lancet 353 (1999), 2246-7.

A paper has found a way to enhance memory, Tang YP. et al. "Genetic enhancement of learning and memory in mice", Nature 400 (1999), 63-9; pp. 25-7; Time (13 Sept. 1999), 44-50. A discussion of genes for high intelligence and the X-chromosome is AJMG 85 (1999), 206-8; Time (13 Sept. 1999), 52. An ethical analysis is Newson, A. & Williamson, R. "Should we undertake genetic research on intelligence?", Bioethics 13 (1999), 327-42. Early onset psychiatric disease screening is discussed in BMJ 318 (1999), 1622-3; 319 (1999), 210. People who are very sensitive to pain may be able to blame their genes, BMJ 319 (1999), 277. Behaviour and genes is discussed in BMJ 319 (1999), 37-40. On music, AJHG 65 (1999), 911-3; Nature 399 (1999), 746. The study of dead brains may aid some studies, NS (26 June 1999), 3. The origins of violence are discussed in Nature 400 (1999), 728-9. Genetic testing for beryllium is debated in Science 285 (1999), 178-9. Zygosity alters the metabolic profile of twins, BMJ 319 (1999), 151-4. Homosexuality is discussed in NS (7 August 1999), 3.

Accompanying the 1999 Danish Council of Ethics Annual Report is an 87pp. Report, Debate Outline on Fetal Diagnostics. They call for establishment of better counseling before expanding fetal testing, and that the public and private market should be subject to binding controls. They argue against economic considerations that weigh the costs saved from avoiding the birth of a sick or disabled child. A paper on the subject is Satz, AB. "Prenatal genetic testing and discrimination against the disabled: A conceptual analysis", Monash Bioethics Review 18 (1999), 11-22. A special supplement is Parens, E. & Asch, A., "The disability rights critique of prenatal genetic testing", HCR 29 (Sept 1999), S1-22. A similar critique is Asch, A. "Prenatal diagnosis and selective abortion: A challenge to practice and policy", AJPH 89 (1999), 1649-57.

Discussion of whether prenatal diagnosis can be offered to all persons or more to older mothers is AJPH 89 (1999), 1592-3; BMJ 319 (1999), 578, 872. A call for ethnic concerns to be better considered is Browner, CH. et al. "Ethnicity, bioethics, and prenatal diagnosis: The amniocentesis decisions of Mexican-origin women and their partners", AJPH 89 (1999), 1658-66. On regulation of genetic tests, Science 286 (1999), 409; Caulfield, T. "Gene testing in the biotech century: Are physicians ready?", CMAJ 161 (1999), CMAJ 161 (1999), 1122-4. I saw a recent commercial in Yahoo (Oct. 1999) which reads, "Time is against you. Gravity is against you. Genetics are against you. But, hey, have a good day".

Two papers on ethics of community research are Weijer, C. "Protecting communities in research: Philosophical and pragmatic changes", CQHE 8 (1999), 501-14; Weijer, C. et al. "Protecting communities in research: current guidelines and limits of extrapolation", Nature Genetics 23 (1999), 275-80. A review on risks and tests is SSM 49 (1999), 1571-98. Letters on protection of persons under the US Americans with Disabilities Act are in JAMA 282 (1999), 1131-2. Judaism and genes are discussed in KIEJ 9 (1999), 159-74. In general on genetics and ethics, SSM 49 (1999), 1427-9; NS (25 Sept. 1999), 50-1. An interesting bacteria called Wolbachia is found to selectively kil males and is found in about one fifth of kown insect species, NS (16 Oct. 1999), 44-7.

An abridged version of a book arguing that race is important is Rushton, JP. Race, Evolution and Behavior (New Jersey: Transaction Publishers, 1999, 108pp.). It is following in the tradition of the Bell Curve, and will no doubt be debated hotly for the eugenic implications of discussing this sensitive issue. A profile of Sir Cyril Burt is in Galton Institute Newsletter (Sept. 1999), 2-3. A general critique of such ideas is Splice 6 (Nov. 1999), 6-9. A discussion of normal and abnormal is in Health Ethics Today 10 (August 1999), 2-9. Disability weights may not be universal, Lancet 354 (1999), 1306. The question of compensation to those sterilised in SwedenGalton Institute Newsletter (Sept. 1999), 3-4.

A review on behaviour is Beckwith, J. "Genes and human behavior: scientific and ethical implications of the human genome project", pp. 917-925 in Crusio, WE. & Gerlai, RT, eds., Handbook of Molecular-Genetic Techniques for Brain and Behavior Research (Elsevier, 1999). Also, on behavioral development, Nature 402 (1999), 234-5. Maternal care influences stress in offspring, and there is non-genomic transmission of some traits, Science 286 (1999), 1155-8. A book review of IQ and Human Intelligence is AJHG 65 (1998), 1476-7. More comments on the intelligent mice with altered NMDA receptors are NS (4 Sept. 1999), 15; SA (Nov. 1999), 30+. A book review of Post, G. & Whitehouse, PJ., ed., Genetic Testing for Alzheimer Disease: Ethical and Clinical Issues (John Hopkins University Press, 1998) is NEJM 341 (1999), 1160-1. Memory can be improved in mice by gene transfer, Science News 156 (1999), 149.

A comprehensive report on the issues is Munthe, C. Pure Selection. The Ethics of preimplantation genetic diagnosis and choosing children without abortion (Acta Philosophica Gothoburgensia 9, 1999, 310pp.). Copies can be obtained from the publishers at Box 222, SE-405 30 Gothenborg, Sweden. There is much discussion on the current situation in Sweden, eugenics, and embryos. A letter that concludes most people do not condemn eugenics is BMJ 319 (1999), 1196. Counseling for childless women at risk for Duchenne Muscular Dystrophy is discussed after a Brazilian study in AJMG 86 (1999), 447-53.

The US Secretary's Advisory Committee on Genetic Testing (SACGT) is seeking comments from the public on oversight and other issues relating to genetic testing. A Federal Register notice, a web site (, and a public meeting on January 27, 2000 in Baltimore, Maryland ( The entire document at Address: Secretary's Advisory Committee on Genetic Testing, National Institutes of Health, 6000 Executive Boulevard, Suite 302, Bethesda, Maryland 20892, USA. Fax: Int+1-301-496-9839. Web:

The results of predictive testing with genetic linkage and definite mutation are reported in Maat-Kievert, A. et al. "Predictive testing of 25% at-risk individuals for Huntington disease (1987-1997)", AJMG 88 (1999), 662-8; Lodder, LN. et al. "Presymptomatic testing for BRCA1 and BRCA2: How distressing are the pretest weeks?", JMG 36 (1999), 906-13. Genetic counseling is discussed in Wilson, GN. Ed., Health Supervision and Anticipatory Guidance in Genetic Syndromes, AJMG Seminars in Medical Genetics 89 (1999), 55-120. Nondirectiveness is quite difficult in practice, see Anderson, G. "Nondirectiveness in prenatal genetics: patients read between the lines", Nursing Ethics 6 (1999), 126-36. The genetic right not to know is defended in Laurie, GT. "In defence of ignorance: genetic information and the right not to know", European J. Health Law 6 (1999), 119-32. A gene bank in Estonia is raising ethical concerns, Science 286 (1999), 1262-3.

There can be tensions in the roles of doctors and expectations of policy makers in genetics, BMJ 319 (1999), 1410-3. Testing is discussed in Gevers, S. "The role of the law with respect to self-testing", European J. Health Law 6 (1999), 155-64; BMJ 319 (1999), 1283-5. Computer-based genetic testing is discussed in JAMA 282 (1999), 1719-20. Infusion of prenatal diagnosis in Brazil is discussed in SSM 50 (2000), 41-51.

Two recent books include, Avise, JC. The Genetic Gods: Evolution and Belief in Human Affairs, (Harvard University Press, 1998, 279pp), review in JAMA 282 (1999), 2179-80; Wingerson, L. Unnatural Selection: The Promise and the Power of Human Gene Research (Bantam, 1998, 399pp). On the need for ELSI studies, NS (25 Dec. 1999), 5; New Statesman (13 Dec. 1999), 14-5; Lancet 354 (1999), 1992-3. The commercialization of genetic research raises extra issues, Science 286 (1999), 2277-8.

A book review of Tapper, M. In the Blood: Sickle Cell Anemia and the Politics of Race (Univ. Pennsylvania Press 1999, 160pp.) is BMJ 319 (1999), 1582. A related paper is Newman M. "An examination of Saskatchewan law on the sterilization of persons with mental disabilities", Saskatchewan Law Rev 62 (1999), 329-48. A legal paper on the enforcement of the US ADA is Syracuse Law Review 48 (1999), 1577-614. There is a need for reform of the diagnosis of borderline personality disorder, Lancet 354 (1999), 2095-6. On the evil of Hitler, Time (31 Dec. 1999), 76-7.

A study on how cultures receive genetic information is Foster, M. & Sharp, RR. "Genetic research and culturally specific risks", TIG 16 (2000), 93-5. A discussion of online genetics resources is Nature Genetics 24 (2000), 1-2. Human genetics research in Iceland has diversified with an alternative research group, NatBio 18 (2000), 247; Science 287 (2000), 951. Human genetics in Germany is reviewed in Haker, H. "Ethics in human genetics", IJB 10 (1999), 35-44. A paper looking at values in prenatal screening is Gillam, L. "Value messages in prenatal screening", Otago Bioethics Report 9 (No.1 Feb. 2000), 2-4. Prenatal screening and disability is discussed in Otago Bioethics Report 9 (No.1 Feb. 2000), 5-7. A videotaped record of a consultation is analyzed in Prenatal Diagnosis 19 (1999), 1043-7.

The use of race in the census is debated in Nature Genetics 24 (2000), 97-8. There is controversy over a white supremist group that took the web site www., for its use, NS (5 Feb. 2000), 11. In general on the census, Science 287 (2000), 239-40. The quality of life and disability is discussed in SSM 50 (2000), 757-9, 761-2. The hope that conditions improve for the disabled in Japan is discussed in Lancet 355 (2000), 209. Disease stigma, and genetic stigma is discussed in Lancet 354 (1999), 2000 Supplement 15-6. An archive of documents from American eugenics past is on-line at, Nature Genetics 24 (2000), 105; Nature 403 (2000), 476. German archives on the eugenic past are being opened for analysis, Nature 403 (2000), 474-5. A book review on Childfree and Sterilised is BMJ 320 (2000), 387. An Italian case of a mentally handicapped girl who is pregnant has resulted in deciding the girl does not need to have an abortion although her mother wants her to, Lancet 355 (2000), 49. Evolutionary psychology and g is discussed in Nature 403 (2000), 378-9.

Attitude surveys include on 261 UK women, Michie, S. et al. "Prenatal tests: How are women deciding?", Prenatal Diagnosis 19 (1999), 743-8; 34 pregnant Welsh women, Al-Jader, LN. et al. "Survey of attitudes of pregnant women toward Down syndrome screening", Prenatal Diagnosis 19 (1999), 23-9; Zahed, L. et al. "Acceptability of prenatal diagnosis for genetic disorders in Lebanon", Prenatal Diagnosis 19 (1999), 1109-12; Jallinoja, P. et al. "Acceptance of screening and abortion for Down syndrome among Finnish midwives and public health nurses", Prenatal Diagnosis 19 (1999), 1015-22; Modell, B. et al. "Informed choice in genetic screening for thalassaemia during pregnancy: audit from a national confidential inquiry", BMJ 320 (2000), 337-41.

The question of control on genetics is addressed in Warnock, M. "Genetic research: Can we control it?", Science and Engineering Ethics 6 (2000), 147-56. A recent book is Young, Frank. E. Genetic Ethics; Do the ends justify the genes?1999 3 parts, 20 chapters, 291pp. The regulation of genetics is debated in Gavaghan, C. "Deregulating the genetic supermarket: Preimplantation screening, future people, and the harm principle", CQHE 9 (2000), 242-60; Aktan-Colllan, K. et al. ¡ÈEvaluation of a counselling protocol for predictive genetic testing for hereditary non-polyposis colorectal cancer¡..., JMG 37 (2000), 108-13; Eccles, DM. Et al. ¡ÈGuidelines for a genetic risk based approach to advising women with a family history of breast cancer¡..., JMG 37 (2000), 203-9. A feminist analysis is Anderson, GW. Et al. "Nursing and genetics: a feminist critique moves us towards transdisciplinary teams", Nursing Ethics 7 (2000), 191-204. A review is Mahowald, MB et al. ¡ÈGenetic counseling: Clinical and ethical challenges¡..., Ann. Rev. Genetics 32 (1988), 547-59.

;The HUGO Ethics Committee has released a statement on Benefit Sharing from genetic research recommending companies to give 1-3% of net profit to humanitarian purposes (see May 2000 issue of EJAIB). A review of the Iceland gene database is Jonatansson, H. "Iceland's health sector database: A significant head start in the search for the biological grail or an irreversible error?", AJLM 26 (2000), 31-68; NS (19 Feb. 2000), 3. Guidelines for human genome research are being developed in Japan for government workers and university staff, PharmaJapan 1690 (27 March 2000), 11. A draft was released from the Human Genome Research Subcommittee of the Council on Science and Technology, PharmaJapan 1694 (24 April 2000), 16. The UK genetics commission is asking the general public for its views on a number of questions, see BMJ 320 (2000), 823.

;Eugenics is discussed in Iredale, R. "Eugenics and its relevance to contemporary health care", Nursing Ethics 7 (2000), 205-14; BMJ 320 (2000), 873. Human biology and social inequality is reviewed in SSM 50 (2000), 1169-70. A paper on research ethics is Reiss, MJ. "The ethics of genetic research on intelligence", Bioethics 14 (2000), 1-15. A discussion of genetics and aging is NS (25 March 2000), 21-3. On science under the Nazis, Science 287 (2000), 1929-30; Nature 403 (2000), 813; JAMA 283 (2000), 1486-7. Discussion of Jord Haider, a right wing politician, in Austria, is Lancet 355 (2000), 667. There is some talk of genocide in the sanctions upon Iraq, BMJ 320 (2000), 722. Sterilization is discussed in BMJ 320 (2000), 662-3; Lancet 355 (2000), 815.

;The ASHG/ACMG Statement on ¡ÈGenetic testing in adoption¡... is in AJHG 66 (2000), 761-7. The psychological impact of gene testing for adult onset disorders is discussed in, MJA 172 (2000), 126-9. Testing for Alzheimer¡Çs is discussed in MJA 172 (2000), 339-43. On shared decision-making and non-directiveness in genetic counseling, JMG 37 (2000), 135-8. Additional papers on nursing and genetics are in Nursing Ethics 7 (2000), 215-61; together with a statement from the American Nursing Foundation, Scanlon, C. "A professional code of ethics provides guidance for genetic nursing", Nursing Ethics 7 (2000),262-8. A statement by the Council for Responsible Genetics on predictive testing is GeneWatch 13 (Feb. 2000), 2. A study by Mayo Clinic researchers found propyhlactic masectomy does reduce cancer risk in women with BRCA mutations, Lancet 355 (2000), 1245. In general on the benefits of genetics, BMJ 320 (2000), 933-5; Science 287 (2000), 1977-81.

Papers include: Hedgecoe, AM. "Reconstructing geneticization: A research manifesto", Health Law Journal 7 (1999), 5-18; Yesley, MS. "Genetics and social policy", Turkish J. Med. Ethics 7 (1999), 1-4; Williams-Jones, B. "Re-framing the discussion: Commercial genetic testing in Canada", Health Law Journal 7 (1999), 49-68; Hlaca, N. "Genetic counseling and the best interest of the child", Law & Human Genome Review 11 (1999), 85-96; Davis, D. "Rational suicide and predictive genetic testing", J. Clinical Ethics 10 (1999), 316-23. A book review of Kilner, JF. Et al., eds, Genetic Ethics: Do the Ends Justify the Genes, is Bioethics 14 (2000), 274-5; on ethics of genetic screening, NEJM 342 (2000), 1459; and on Genetic Testing in the USA, Bioethics 14 (2000), 279-84. A high demand for BRCA testing and prophylactic surgery in the Netherlands is reported in Lancet 355 (2000), 2015-20.

The question of handicap is discussed in Aksoy, S. "Who is normal? Who is handicapped?: An ethical approach to the concepts", Turkish J. Med. Ethics 7 (1999), 12-6. On the concept of disability, Harris, J. "Is there a coherent social conception of disability?", JME 26 (2000), 95-100. A book review on black athletic prowness is SA (May 2000), 112-4. An essay on racial medicine disparity in the US South is Bull. History Medicine 74 (2000), 107-37. A paper looking at anatomy at the University of Vienna 1938-45 is Lancet 355 (2000), 1445-57, 1385. On genes and equality between gender, NEJM 342 (2000), 1761.

A review is Kent, A. "The role of voluntary consumer organizations in genetic services in the United Kingdom", Community Genetics 2 (2000), 156-61. On French knowledge of breast cancer genetics, Community Genetics 2 (2000), 165-72. In general on genetic counseling, JMG 37 (2000), 476-8; Hamann, HA. Et al. "Attitudes toward the genetic testing of children among adults in a Utah-based Kindred tested for BRCA1 mutation, AJMG 92 (2000), 25-32; Williams JK. Et al. "Psychological impact of predictive testing for Huntington disease on support persons", AJMG 96 (2000), 353-9; Biesecker, BB. "Psychological factors predicting BRCA1/BRCA2 testing decisions in members of hereditary breast and ovarian cancer families", AJMG 93 (2000), 257-63. Parent's responses to their child's diagnosis of neurofibromatosis 1 are discussed in AJMG 93 (2000), 136-42.

A paper on what we should do with knowledge is Andre, J. et al. "On being genetically "irresponsible", KIEJ 10 (2000), 129-46. Papers on reproductive rights are in Reproductive Health Matters 8 (2000), 7-62. On carrier testing in Fragile X syndrome, AJMG 92 (2000), 336-42. Community acceptance of population screening for cystic fibrosis is discussed in AJMG 93 (2000), 198-204, 205-6.

There is a claim that the neural basis of general intelligence has been found, Lancet 356 (2000), 315 (see Animals section). On genetics and disability, GeneWatch 13 (July 2000), 4-6; AJPH 90 (2000), 1315-6. Eugenics may be evolutionary nonsense, NatGen. 25 (2000), 253. Also, Dickens BM, Cook R.: Voluntary and involuntary sterilization: denials and abuses of rights. Int J O&G. 68 (2000), 61-7. The public health impact of genocide is discussed in JAMA 284 (2000), 612-3. On anatomy in Vienna, Lancet 356 (2000), 343; and racism, AJPH 90 (2000), 1212-5; Nature 406 (2000), 553. Mapping the moral contours of homosexuality is discussed in Progress in Human Geography 24 (2000), 191-217; also for teaching the issues, American Biology Teacher 62 (2000), 326-30.

The genetics revolution is discussed in NEJM 343 (2000), 141-4. Book reviews on Watson, JD. A Passion for DNA (Cold Spring Harbor Laboratory Press 2000) Include BMJ 321 (2000), 12; Science 289 (2000), 554-5; NEJM 343 (2000), 370. A book review on French DNA is NatGen. 25 (2000), 261. Education of genes and genomics is discussed in several courses, e.g. Genesage, GeneEd, see GEN 20 (1 Sept. 2000), 31, 34, 82. Physicians also need education as shown by a French physician survey, Community Genetics 2 (1999), 165-72. The role of voluntary consumer organizations in genetic services in the UK is discussed in Community Genetics 2 (1999), 137-208. A book review of The Century of the Gene is Nature 408 (2000), 26-7. A review of the Mendelian revolution is TIG 16 (2000), 380. A theoretical paper on genetic coding is in Philosophy of Science 67 (2000), 26-44. Health policy and genetics is discussed in SSM 51 (2000), 821-9; Science 289 (2000), 1890-2.

The argument against connecting abortion and disability of adults is made in Nelson, JL. "Prenatal diagnosis, personal identity, and disability", KIEJ 10 (2000), 213-28. On the ethics of use of Guthrie cards for newborn screening, Elkin K. & Jones DG. "Guthrie cards: Legal and ethical issues", New Zealand Bioethics J. 1 (Oct. 2000), 22-6. Parents may worry about childrenfs genetic results, Grosfeld, FJM. Et al. gParentsf responses to disclosure of genetic test results of their childrenh, AJMG 94 (2000), 316-23. The case of prenatal diagnosis for creating a donor for an older sibling is reported in Nursing Times 96 (26 Oct. 2000), 10-1; BMJ 321 (2000), 917. A book review of From Chance to Choice: Genetics and Justice is NEJM 343 (2000), 820; and of The Genetic Revolution and Human Rights, BMJ 321 (2000), 1086. A review of an art show is BMJ 321 (2000), 903.

On the use of predictive testing, Dena, DS. "Rational suicide and predictive gene tic testing", J. Clinical Ethics 10 (1999), 316-23; Harper, PS. Et al. gTen years of presymptomatic testing for Huntingtonfs disease: The experience of the UK Huntingtonfs Disease Prediction Consortiumh, JMG 37 (2000), 567-71; Evers-Kiebooms, G. et al. gThe psychological complexity of predictive testing for late onset neurogenetic diseases and hereditary cancers: Implications for multidisciplinary counselling and for genetic educationh, SSM 51 (2000), 831-41. A study of why patients do not come to genetic counseling sessions is JMG 37 (2000), 810-5. A paper arguing against genetic testing for familial dementia, AJHG 67 (2000), 1033-5.

Disclosure of test results to family members in France is reported in AJMG 94 (2000), 13-8. Client and Counsellor comparisons of the assessment of genetic counseling from the USA are discussed in AJMG 94 (2000), 189-97. A book review on Genetic Counselling is AJMG 94 (2000), 177; and of Strong, TH. Expecting Trouble: The Myth of Prenatal Care in America (New York University 2000), NEJM 343 (2000), 1126.

Science and sociobiology are discussed in Nature 407 (2000), 673-4. A US court case has resulted in large damages to the Aryan Nation in an attempt to put them out of business, Newsweek (4 Sept. 2000), 50. A book review on Why Race Matters is Ethics 110 (2000), 847-8. On the roots of Nazi science, Nature 407 (2000), 823-4. There is controversy over the situation of a new Polish disco over a former deathcamp site, Newsweek (9 Oct. 2000), 37.

Attitude studies include: Weinans, MJN. Et al. “How women deal with the results of serum screening for Down syndrome in the second trimester of pregnancy”, Prenatal Diagnosis 20 (2000), 705-8; McConkie-Rosell, A. et al. “Longitudinal study of the carrier testing process in Fragile X syndrome: Perceptions and coping”, AJMG 98 (2000), 37-45; Liede, A. et al. “Evaluation of the needs of male carriers of mutations in BRCA1 or BRCA2 who have undergone genetic counseling”, AJHG 67 (2000), 1494-504; Lodder, L. et al. “Psychological impact of receiving a BRCA1/BRCA2 test result”, AJMG 98 (2001), 15-24. Fanos, JH. Et al. “Sib understanding of genetic and attitudes toward carrier testing for X-linked severe combined immunodeficiency”, AJMG 98 (2000), 46-56; JMG 37 (2000), 883-4; Baillie, C. et al. “Ultrasound screening for chromosomal abnormality: Women’s reactions to false positive results”, Brit. J. Health Psychology 5 (2000), 377-94. Presenting numbers rather than words is clearer for negative results in pregnant women, Prenatal Diagnosis 20 (2000), 714-8. In the UK only a quarter of persons elgible for Huntington's disease testing have taken it, Lancet 356 (2000), 1944-5; JMG 37 (20000), 567-71.

In general on prenatal diagnosis, AWHONN 4 (Oct. 2000), 33-6; BMJ 321 (2000), 1086, AJMG 97 (2000), 109-11. General ethics in genetics is discussed following the WHO expert consultation statement in BME 163 (2000), 8-9; JME 26 (2000), 261-5. Genethics is discussed in Lancet Perspectives 356 (2000), s38. Nondirective counseling is assessed in BMJ< 321 (2000), 1383-8, 1389-92. Needs of BRCA1 and BRCA2 carriers are discussed in JMG 37 (2000), 866-74. Prenatal care in Puerto Ricans< is discussed in SSM 51 (2000), 1723-39; 52 (2001), 169. Commercial predictive testing is discussed in JME 26 (2000), 282-6; 444-6. US companies are offering many different genetic tests, BioFutur Special Issue (Feb. 2000), 66-7; BioCentury (13 Nov. 2000), A10.

Eugenics and reproductive choice is discussed in GeneWatch 14 (Jan. 2001), 1-7. The Graz Medical Faculty in Styria, Austria is reexamining its history and involvement in killing of Jews in the Nazi era, Lancet 356 (2000), 1994. A book review of Nurses in Nazi Germany: Moral choice in history, is Lancet 356 (2000), 1859. Useful statements on ethics are available from the German Society of Human genetics, The name of Eugenics is discussed in Galton Institute Newsletter <39 (Dec. 2000), 1, 3. On talking about race in a scientific context, Science & Engineering Ethics 6 (2000), 485-99; AJPH 90 (2000), 1699-702. On race and public health in South Africa, AJPH 90 (2000), 1690-3. Use of race in censuses is discussed in AJPH 90 (2000), 1687-9, 1704-13, 1735-7, 1738-45. Persons with Down syndrome may express pain less clearly and slowly than the general population, but they still need pain control, Lancet 356 (2000), 1867, 1882-7.

A book review of What's Normal is JAMA 284 (2000), 3185-6. On violent behaviour and mental illness, Science News 158 (2000), 279; Science 290 (2000), 1093-7. The Nuffield Council is looking at the ethics of human behaviour research, Nature 409 (2001), 276. The needs for education by oncology nurses is discussed in AJMG 98 (2001), 3-12. A survey of knowledge of ethical standards in genetics is JAMA 284 (2000), 2595-7. The question of care for people with learning difficulties is discussed in BMJ 321 (2000), 1297.

Selected papers from a meeting, Genes and Society: Impact of new technologies on law, medicine, and policy, held 10-12 May, 2000 at the Whitehead Institute for Genomic Research is JLME 28 (Winter 2000), Special Supplement, 64pp. A paper on prenatal tests finding a variety of views is Lewando-Hundt, G. et al. "Knowledge, action and resistance: the selective use of prenatal screening among Bedouin women of the Negev, Israel", SSM 52 (2001), 561-9. A survey of written antenatal screening policies in the UK is BMJ 322 (2001), 22-3. In general on prenatal diagnosis, Lancet 357 (2001), 310-1.

A Dutch survey found 72% of parents use CF screening, Henneman, L. et al. "Attitudes towards reproductive issues and carrier testing among adult patients and parents of children with cystic fibrosis", Prenatal Diagnosis 21 (2001), 1-9. Failure to refer for testing for cystic fibrosis in the UK is considered unethical, BMJ 322 (2001), 310-1. On genetic testing in children, JAMA 285 (2001), 91. Genetic testing in adoption is discussed in University of Illinois at Chicago Dept. Medical Education Bulletin 7 (Winter 2001), 4. A study of how women with a family history of breast cancer and their doctors act regarding genetic advice is BMJ 322 (2001), 26-8.

Tongan genes are being used by an Australian company for genetic research raising questions of population genetics, NatMed. 7 (2001), 8. A series of 21 papers on the HGDP is in Politics and the Life Sciences 18 (1999), 285-40. A book review of Genetics and Analysis of Quantitative Traits is AJHG 68 (2001), 548-9. On genes and music, Science 291 (2001), 52-6; AJMG 98 (2000), 290-2. The future of genetics is discussed in Nature 409 (2001), 981-2; JAMA 285 (2001), 658-9.

A new report is Danish Council of Ethics, Screening _€ a report (Danish Council of Ethics, 2001, 118pp.). It examines cancer screening, and considers there is still a lack of knowledge of the impact of screening including in the area of false test results. The Health Council of the Netherlands has also released a report on screening for colorectal cancer on 19 January, 2001, Network 16 (March 2001), 7. They are considering a nationwide screening program. A review of 5 years of screening for familial hypercholesterolaemia in the Netherlands is Lancet 357 (2001), 165-8. Women_fs interest in genetic testing for breast cancer susceptibility may be based on unrealistic expectations, AJMG 99 (2001), 99-110; and on family history, SSM 52 (2001), 1433-40. Women_fs understanding of a normal smear test result is different between people, BMJ 322 (2001), 526-8. In general on prognosis in medical care, BMJ 322 (2001), 437.

A UK report covering general issues of new genetics from a series of 6 meetings is Glasner, P. New Genetics in Society. Final Report to the ESRC (University of West England Science and Technology Policy Unit, 2000, ISBN 1-86043-3154, 18pp.). A study of what women are told after prenatal diagnosis of a sex chromosome abnormality in the UK is BMJ 322 (2001), 441-2, 463-6. On predictive testing for Huntington disease, Lancet 357 (2001), 883. In general on ethics and genetics, NEJM 344 (2001), 778; JAMA 285 (2001), 1515; JME 26 (2000), 160-5, 261-5. Legal issues in genomic medicine are reviewed in NatMed. 7 (2001), 268-71.

A recent document from the Nuffield Council in the UK is Genetics and human behaviour: the ethical context (deadline for responses is 31 July 2001), 10pp. See a summary of the consultation questions in BME 165 (Feb. 2001), 4-5. Misconceptions about the use of genetic tests in populations exist, BMJ 322 (2001), 709-12. Decision making about low risk pregnancy and amniocentesis is surveyed in AJPH 91 (2001), 639-41.

The interaction of genes and environment to improve intelligence are discussed in NS (21 April 2001), 44-7. A critique of growth in prenatal diagnosis following concerns of the disability support movement is GeneWatch 14 (March 2001), 5-14; also BME 165 (Feb. 2001), 3-4. On disease and wholeness, JME: Medical Humanities 26 (2000), 9-17, 9-100. Perceived body images in CF, J. Behavioural Med. 23 (2000), 501-17. The case of a baby Messenger who was disconnected from his life support system and allowed to die is reviewed in JME 26 (2000), 242-8. A book review on African Americans and race in medicine is JAMA 285 (2001), 1219. On Buraku in modern Japanese literature, J. Japanese Studies 26 (2000), 1-39.

On the growth in eugenics, Galton Institute Newsletter 37 (June 2000), 1. The writing of Blacker, Fisher and Penrose on the fundamentals of eugenics is discussed in Galton Institute Newsletter 37 (June 2000), 2-3. A report from Hadamar, a WWII German psychiatric center, Biomolecular Engineering 17 (2001), 39, 65-9. Pain in Down syndrome is discussed in Lancet 357 (2001), 1041. On evolutionary psychology, BMJ 322 (2001), 740. On Spearman, Galton Institute Newsletter 36 (March 2000), 2-4. Commentaries on wrongful birth and wrongful life actions are in New Zealand Bioethics J. 2 (2001), 26-41. A study of treatment of Down syndrome children found they have less favourable treatment, BMJ 322 (2001), 815. Prenatal diagnosis of heart defects aids survival after surgery, BMJ 322 (2001), 638. The Irish government is appealing a lower court decision that would guarantee free education to all children, including disabled children, irrespective of the age, Lancet 357 (2001), 866.

On maternal age and fetal loss, BMJ 322 (2001), 429-30.

A book review on Parens, E. and Asch, A. Prenatal testing and disability rights is GeneWatch 14 (May 2001), 14; and in NEJM 344 (2001), 1404-5. On autism and disability, NS (14 April 2001), 42-5. A review paper is Alderson, P. "Prenatal screening, ethics and Down's syndrome: a literature review", Nursing Ethics 8 (2001), 360-74. Prenatal screening and women's choice is discussed in GeneWatch 14 (July 2001), 4-11. Ethics of preimplantation diagnosis are discussed in Human Genome Review 13 (July 2000), 211-32; BMJ 322 (2001), 1008-9; JAMA 285 (2001), 3130+, 3143-4.

On truth-telling in genetics for Huntington's disease tests, JMG 38 (2001), 39-42. The 1994-98 experience on prenatal testing for Huntington's disease is reported in JMG 38 (2001), 333-5. Risk perception and cancer testing is discussed in JMG 38 (2001), 139-42; BMJ 322 (2001), 1174-8. On predictive testing. BMJ 322 (2001), 1052-6. Surnames and human genetics are discussed in TIG 17 (2001), 353-6.

A paper on audit is Davidson, H. et al. gLaw, ethics and epidemiology: The case of the cervical screening audit:, New Zealand Bioethics J. 2 (June 2001), 8-26. Routine audit should be required, BMJ 322 (2001), 1179. In general on medical genetics and ethics, see a special issue of BMJ 322 (28 April 2001), 1069-70; NatGen 28 (2001), 111. A paper on genetics ethics committees in the USA is AJPH 91 (2001), 787-90. Genetics for developing countries are discussed in BMJ 322 (2001), 1006-7.

A call for research into genetics and psychopathy is Nature 410 (2001), 287. The Max Planck Society has offered an apology to the victims of Nazi science, Science 292 (2001), 179-81; Nature 411 (2001), 726. On IBM and Nazis and the Holocaust, Nature 411 (2001), 993-4. Papers on Sir Francis Galton are in the Galton Institute Newsletter (March 2001), 2-3; (June 2001), 2-3. The proceedings of the Galton Institute Conference 2000 are published as Peel, RA. & Timson, J. A Century of Mendelism (Galton Institute 2001, 80pp.). A comparison of Bali and Tokyo on attitudes to the mentally sick is Psychiatry & Clinical Neurosciences 54 (2000), 547-52.

The roles of nurses in genetic counseling is discussed in Nursing Ethics 8 (2001), 473-4. The questions of direct to the consumer advertising of genetic testing is discussed in HCR 31 (2001), 33-5; and Williams-Jones, B., "Private genetic testing in Canada: A summary", Health Law Review 9 (2001), 10-3. Further papers on genetic testing ethics are in Health Law Review 9 (2001), 3-18; J. Health Politics, Policy and Law 26 (2001), 457-64; Jallinoja, P. "Genetic screening in maternity care: preventative aims and voluntary choices", Sociol. Health & Illness 23 (2001), 286-307. On children and genetic technology, HCR 31 (July 2001), 51-2; Michie, S. et al. "Predictive genetic testing in children and adults: A study of emotional impact", JMG 38 (2001), 519-26.

The UK HFEA has approved the use of preimplantation genetic diagnosis for chromosome number abnormalities, BMJ 323 (2001), 125. The aneuploidy screening will be used to improve the success rate of IVF. On chromosomal abnormalities and mental retardation, Lancet 358 (2001), 7-8. Reproductive options for persons with mitochondrial genetic diseases are reviewed in AJMG 106 (2001), 102-114. A call for systematic reviews of diagnostic and screening tests is BMJ 323 (2001), 157-62.

A paper on exceptionalism is Ross, LF. "Genetic exceptionalism vs. paradigm shift: Lessons from HIV", JLME 29 (Summer 2001), 141-8; 149-51. A discussion of prophylactic masectomy for women with BRCA1 and BRCA2 mutations is NEJM 345 (2001), 159-64, 207-8. A study of emotions in families with breast cancer history is Brit. J. Health Psychology 6 (2001), 151-65. Cultural aspects of cancer genetics should be the subject of further research, JMG 38 (2001), 425-9. A Belgium study on intentions based on predictive breast cancer testing is JMG 38 (2001), 540-7.

The question of a normal life and living with thalassemia major or sickle cell anemia in the UK is reported in SSM 53 (2001), 615-26. On disability discrimination in the UK, BMJ 323 (2001), 178-9. A paper looking at social supports is Alderson, P. "Down's syndrome: cost, quality and value of life", SSM 53 (2001), 627-38. The German funding agency, DFG, is re-examining its own links to Nazi science before WWII. A discussion of Eurasian children and persons is Time (23 April 2001), 34-41. A paper on Galton is in J. History of Biology 34 (2001), 83-114. On the search for genes to make facial beauty, Australasian Science (July 2001), 31-3. Book reviews on the future enhancement through genetics is Nature 412 (2001), 680-1. A comparison of genetic justice and human justice is in Nature 412 (2001), 379-80.

The ethics committee of the American Fertility Society has approved the use of sex selection using preimplantation diagnosis, Int. Herald Tribune (29 Sept. 2001), 1, 7. Support for sex selection is in David McCarthy, "Why sex selection should be legal", JME 27 (2001), 302-7. The Dutch Health Council has recommended that all pregnant women be offered aserum screening for fetal abnormalities, extending the current policy of offering amniocentesis or CVS to mothers 36 years and older, Network 16 (August 2001), 3.

A paper on genetics and religion is Messer, NG. "Human genetics and the image of the Triune God", Science and Christian Belief 13 (2001), 99-112. On consent, Burgess MM. "Beyond consent: ethical and social issues in genetic testing", Nature Reviews: Genetics 2 (2001), 147-52. Ethics and genetics in Russia is discussed in Law and Human Genome Review 14 (Jan. 2001), 205-14. In general on ethics and genetics, NatGen 28 (2001), 297-8; 29 (2001), 13-4.

A computer program used to educate women about breast cancer susceptibility is described in AJMG 103 (2001), 16-23. The number of women at high risk of breast cancer who have entered long term clinical trials aimed at prevention is lower than those who entered detection trials, Lancet 358 (2001), 853, 889-90. However when asked most persons preferred a personal counselor compared to a computer, AJMG 103 (2001), 24-31. A paper on predictive genetic testing in children is MJA 175 (2001), 379-81. A study of the motivations for genetic testing for HNPCC is AJMG 103 (2001), 9-15. A one year study on the psychological impact of news of genetic risk for Huntington disease is AJMG 103 (2001), 188-92.

Discussion of eugenics is in Science 294 (2001), 59-60. A book review of Medicine and the German Jews: A History, is JAMA 286 (2001), 1383. A discussion of Galton is in NS (29 Sept. 2001), 44-5. Discussion of genetics and race is in GeneWatch 14 (Sept. 2001), 2, 4-8. A book review on autistic savants is Nature 413 (2001), 251-2. Discussion of personal views of body among persons with cystic fibrosis found gender differences, SSM 53 (2001), 1163-74.

A study of inaccuracy in reporting schizophrenia research in textbooks is Politics and Life Sciences 19 (2000), 89-99. The incidence of schizophrenia in non-white persons in London is higher in communities where they comprise a lower proportion, BMJ 323 (2001), 1336-8. Racial stereotyping by psychiatrists in the UK is discussed in BMJ 323 (2001), 905-6. A report on how to understand the psychological roots of hate is Research News & Opportunities in Science and Theology 21 (Nov. 2001), 5, 10; and papers on aggression include, Trends in Neurosciences 24 (2001), 713-7; NatGen 29 (2001), 251; AJHG 70 (2001), 279. In general on mental illness, BMJ 323 (2001), 1192. On the WHO classification of disability, ICIDH, SSM 53 (2001), 1261-73.

A single gene, angiotensin converting enzyme, may determine whether a person is a good sprinter or miler, Science 294 (2001), 2285. The issue of race, drug response and genes is discussed in NatGen 29 (2001), 239-40.

The highest court of appeal in France has upheld compensation being paid to children born with Down syndrome because of mistakes in the prenatal diagnosis procedures, BMJ 323 (2001), 1384; Lancet 358 (2001), 1972. A law may be discussed in the French Parliament to prevent further cases of compensation. A review is Hunter, AGW. Et al. gEthical, legal, and practical concerns about recontacting patients to inform them of new information: The case in medical geneticsh, AJMG 103 (2001), 265-76; JAMA 286 (2001), 2315+, 2326-8. A book review of Milunsky, A., Your Genetic Destiny, is JAMA 286 (2001), 2330-1.

About 70% of UK persosn support use of preimplantation diagnosis according to a HFEA survey,, BMJ 323 (2001), 1207. On the use of tests to select a matching stem cell door, Boyle, RJ. & Savulescu, J. gEthics of using preimplantation genetic diagnosis to select a stem cell donor for an existing personh, BMJ 323 (2001), 1240-3. Adoption testing is discussed in Jansen, LA. & Ross, LF. gThe ethics of pre-adoption genetic testingh, AJMG 104 (2001), 214-20. An Australian study of why 40% of women over 37 years old do not take advantage of free prenatal diagnosis is Prenatal Diagnosis 21 (2001), 842-7.

A comment on the emergence of new eugenics is Science 294 (2001), 59, 61. Book reviews on eugenics are in Nature 414 (2001), 583; JAMA 286 (2001), 2329-30. A report from the French National Ethics Committee on prejudice and congenital handicaps is in Les Cahiers 29 (Oct. 2001), 4-15. A book review of A Life of Sir Francis Galton is NS (20 Oct. 2001), 58. A book review of Medicine and the German Jews is Nature 414 (2001), 489-90; BMJ 323 (2001), 1257; and another book review of Sir Francis Galton, is Nature 415 (2002), 19-20. A book review of IBM and the Holocaust is Lancet 358 (2001), 1558. On race, Science 294 (2001), 2101-2; AJPH 91 (2001), 1736-41. On genetic inheritance of intelligence, NS (10 Nov. 2001), 12.

A report on direct to the consumer advertising of gene tests is Reproductive Healthcare Matters 9 (Nov. 2001), 44-8.

The Danish Council of Ethics has published a report, Genetic Investigation of healthy Subjects. Report on Presymptomatic Testing, 83pp. (2002) with their 2000 Annual report. Copies are available free. A call to allow testing in children unless clear harm will be caused is Robertson, S. & Savulescu, J. "Is there a case in favour of predictive genetic testing in young children?", Bioethics 15 (2001), 26-49. On the disclosure of genetic risk, Bioethics 15 (2001), 231-7.

A paper calling for consumers to chose is Levitt, M. "Let the consumer decide? The regulation of commercial genetic testing", JME 27 (2001), 398-403. The ethical dilemmas of midwifes in selective termination of pregnancy are discussed in Savulescu, J. "Is current practice around late termination of pregnancy eugenic and discriminatory? Maternal interests and abortion.", JME 27 (2001), 165-71; Nursing Ethics 9 (2002), 179-80.

A 60 page report in French from a symposium on what is normal appears in Les Cahiers 30 (Jan. 2002). A paper criticising the views of some bioethicists on disabled persons is Munzarova, M. "Towards the abolition of man: The voice of disabled persons cannot be avoided", BME 174 (2002), 13-21. Disability is discussed in JME 27 (2001), 361-2. Innateness is discussed in Nature 415 (2002), 739. A book review of The Impact of the Gene is NatGen 30 (2002), 137. On the increase in IQ, NS (2 March 2002), 24-7.

A paper on how to apologise for the past and Nazi Science is Science and Engineering Ethics 8 (2002), 31-42. A new book on genocide is Power, Samantha, A Problem from Hell: America and the Age of Genocide (Basic Books, 610pp.). A discussion of genetics in Iceland is GeneWatch 15 (Jan. 2002), 6-10.

Genetic essentialism and mana is discussed in New Genetics and Society 20 (2001), 43-58. A simple blood test for antibody m266might predict Alzheimer long before it appears, NS (30 March 2002), 15; Science 295 (2002), 2264. The use of predictive medicine and schizophrenia is debated in New Genetics and Society 20 (2001), 5-22. On the ethics of testing: Merz, JF. Et al. "Protecting subjects" interests in genetics research", AJHG 70 (2002), 965-71; The Scientist (1 April 2002), 16-7. A conference report on genes and law is in Human Genome News 12 (Feb. 2002), 5-6. A study of reproductive health in persons with homozygous beta-thalassemia is in F&S 77 (2002), 119-27. In general on genetics and ethics see NatGen 30 (2002), 343-4; BMJ 324 (2002), 690-1, 863-4; JAMA 287 (2002), 773; Lancet 359 (2002), 881-4. Craig Venter has set up a new Institute for considering ethical issues of genetics, Nature 417 (2002), 3. Mortality of Down syndrome is discussed in Lancet 359 (2002), 275-6, 1019-25.

Teaching ethical issues of genetics is discussed in HCR 32 (March 2002), 37-39. A study of decisions in 53000 pregnancies in a hospital St. Louis, Missouri, USA, for termination if fetal anomaly is found is O&G 99 (2002), 216-22. The ethics of prenatal diagnosis are discussed in Sarangi, S. & Clarke, A. "Constructing an account by contrast in counseling for childhood genetic testing", SSM 54 (2002), 295-308; Williams, C. et al. "Is nondirectiveness possible within the context of antenatal screening and testing?", SSM 54 (2002), 339-47; J. Law & Medicine 9 (2001), 28-40; BME 176 (March 2002), 13-8. A Canadian study has shown a significant decrease in infant mortality as a result of prenatal diagnosis, JAMA 287 (2002), 1561-7.

A Canadian prohibition against immigrants with disabilities is under legal challenge, Lancet 359 (2002), 240. France is changing the law to prevent people with disabilities from suing doctors for compensation for simply being born, Lancet 359 (2002), 233. A comparison of disabled older persons in Japan and USA is Geriatrics & Gerontology International 2 (2002), 53-6. Body image and disability is discussed in SSM 54 (2002), 971-80. A discussion of non-disease is BMJ 324 (2002), 883-5. A gene for super-sociality is discussed in Current Biology 12 (2002), R180-1. Book reviews of A Life of Sir Francis Galton are in Science 296 (2002), 472; JAMA 287 (2002), 522. Consanguinity is discussed in Time (22 April 2002), 28. The debate on whether there is race in genetics is in NS (20 April, 2002), 34-5.

A paper discussing US policies is Hacker, C. "How much are our children worth? Evaluation of financial incentives for pediatric testing", Biotechnology Law Report 21 (April 2002), 113+. Consent for newborn screening is discussed in Health Law J. 9 (2001), 61-112. The ethics of conceiving to obtain hematopoietic stem cells are discussed in HCR 32 (May 2002), 34-40.

The ethics of screening people against cancer is discussed in NS (22 June 2002), 34-7. The German Parliaments advisory commission on law and ethics in modern biotechnology has advised against preimplantation diagnosis, Lancet 359 (2002), 1926. A discussion document (the final one) from the New Zealand Independent Biotechnology Advisory Committee is on ethics of genetic testing (June 2002, 20pp.). Autonomy in genetic testing is discussed in CQHE 11 (2002), 246-56. Information resources on ethics and genetics are summarized in KIEJ 12 (2002), 103-113.

In the UK genetic testing kits are regulated under IVD Regulations (SI2000/1315), BME 179 (July 2002), 2. In general on ethics of prenatal diagnosis, AJLM 28 (2002), 233-70; Stern, HJ. Et al. "Non-disclosing preimplantation genetic diagnosis for Huntington disease", Prenatal Diagnosis 22 (2002), 503-7. Genetic counseling for sex chromosome abnormalities is reviewed in AJMG 110 (2002), 3-10. The German Parliament advisory commission on law and ethics in modern medicine has said that the current ban on preimplantation diagnosis should not be lifted, Lancet 359 (2002), 1926. There was controversy in Germany over payment for a child who was born handicapped following a doctor's misdiagnosis, Lancet 359 (2002), 2259. A Dutch study on attitudes to Down syndrome screening is Prenatal Diagnosis 22 (2002), 624-9. Attitudes to preimplantation genetic diagnosis of thalassemia in Hong Kong are reported in Prenatal Diagnosis 22 (2002), 508-11. On government policy for genetics advice, Nature Reviews Genetics 3 (2002), 631-6. Predictive testing for children is reviewed in Bioethics 15 (2001), 26-49.

A review of Galton's legacy to research on intelligence is J. BioSocial Science 34 (2002), 145-72. Polymorphism in norepinephrine transporter allelic variants is not found to be linked to reward-dependence personality trait, AJMG 114 (2002), 649-51. However, DRD4 is linked to novelty seeking, AJMG 114 (2002), 643-8. A study of why social scientists reject the concept of memes is NS (3 Aug., 2002), 40-3.

Letters on documenting Lysenkoism are in Science 297 (2002), 1646-7. On disability and normality, BMJ 325 (2002), 342. A UK study has found that personality status changes over time in neurotic disorders, Lancet 359 (2002), 2253-4. The former Peruvian government has been accused over sterilizations which were at the highest level in their reign, BMJ 325 (2002), 236. The practicality of recommendations for dietary control in phenylketonuria are reviewed in Lancet 360 (2002), 55-7. A review article on eugenics is Stern, AM. "Making better babies: Public health and race betterment in Indiana, 1920-1935", AJPH 92 (2002), 742-52, 707-8. A book review of Presidential Disability is Lancet 359 (2002), 2284-5. On autism and genius, SA (June 2002), 60-9.

A review of the impact of genetic counseling on women at increased risk of developing hereditary breast cancer is SSM 54 (2002), 1463-70. An Israeli study of the impact of genetic information is AJMG 111 (2002), 147-51. A survey of the motives of women wanting to attend familial breast cancer clinics is JMG 39 (2002), 410-4. Bilateral prophylactic oophorectomy in carriers of BRCA1 or BRCA2 reduces the risk of cancer, NEJM 347 (2002), 1609-15, 1616-22. In general on ethics of genetic counseling, NEJM 346 (2002), 1420; Stern, SJ. et al. "Attitudes of deaf and hard of hearing subjects towards genetic testing and prenatal diagnosis of hearing loss", JMG 39 (2002), 449-53.. Genes and social justice is discussed in Bioethics 16 (2002), 72-83; and in this issue of EJAIB 12 (2002).

A case of a child selected to be free of a late onset disease, Alzheimer's disease, is discussed in JME 28 (2002), 290. Opinion 72 of the French National Bioethics Committee on Preimplantation Diagnosis is in Les Cahiers 33 (October 2002), 4-21. In general on the future of genetic testing, NS (23 Nov. 2002), 42-5. Design of life is discussed in BME 180 (2002), 6-7. Moral boundaries in genetic medicine are discussed in Bioethics 15 (2002), 189-205; BMJ 325 (2002), 974; Lancet 360 (2002), 1613. The effects of consanguinity on screening for thalassemia in Pakistan is discussed in NEJM 347 (2002), 1162-8, 1200-2. Prenatal screening issues for achondroplasia are discussed in Prenatal Diagnosis 22 (2002), 933-40.

Discussion of antenatal screening policies for Down syndrome is in BMJ 325 (2002), 1034-5. A survey of attitudes of 75 health professionals in Lebanon found similar attitudes to Europe for a range of genetic conditions, Zahed, L. et al. "Attitudes towards prenatal diagnosis and termination of pregnancy among health professionals in Lebanon", Prenatal Diagnosis 22 (2002), 880-6. A survey of physicians and midwives in France is in Prenatal Diagnosis 22 (2002), 811-7. A US study of factors that affect women to chose aminocentesis when over 35 years of age is Prenatal Diagnosis 22 (2002),769-74. Prenatal screening is being increasingly used in Ladakh, India, SSM 55 (2002), 1089-102.

Parents obligations to children are discussed in Rakowski, E. "Who should pay for bad genes?", California Law Review 90 (2002), 1345-414. Discussion of the Chinese concept of yousheng is in Tang, K. "Ethical dimensions of yousheng (healthy birth or eugenics): The perspective of a Chinese ethicist", New Zealand Bioethics J. 3 (Oct. 2002), 9-14. A book review of A Life of Sir Francis Galton is NEJM 347 (2002), 1537-8. A summary from the Nuffield Council of Bioethics Report on Genetics and Human behaviour is in BME 181 (2002), 8-10; BMJ 325 (2002), 733. Cognitive change and the APOE4 allele are discussed in Nature 418 (2002), 932. Book reviews of Pinker, S. The Blank State: The modern denial of human nature (Penguin Press, 2002) are in Nature 419 (2002), 251-2; NS (9 Nov. 2002), 56. The results of computer modeling of evolution and society is presented in Nature 419 (2002), 677-8. Genetic determinism is discussed in NatGen 32 (2002), 227-8. A discussion of designing children to be deaf is in BMJ 325 (2002), 771-3. The attitudes of Asian people to being deafis discussed in SSM 55 (2002), 1757-69.

On genetics and privacy, JAMA 288 (2002), 1411-2. Public policy in genetics is discussed in Gene Therapy 9 (2002), 662-6.

Book reviews of Warnock, M., Making babies: Is there a right to have children?  (Oxford University Press 2002) are in Nature 420 (2002), 269-30. Also on a right to be born, JME 28 (2002), 65-7. A French study found an amniocentesis -associated risk of induced miscarriage of 0.86% in the second trimester, Prenatal Diagnosis 22 (2002), 1036-9.

A report from the Eugenics Society archives in the Wellcome Library for the History and  Understanding of Medicine in London is in Galton Institute Newsletter (Sept 2002), 3-5. A discussion of the life of disabled children is HCR 32 (Nov. 2002), 29-37. Lay understanding of race and genetics are discussed in Public Understanding of Science. 11 (2002), 373-88. Gene testing for BRCA1 mutation in the UK is discussed in Lancet 361 (2003), 178-9. A study of Puerto Rican understanding of child disability is SSM 55 (2002), 2093-105.

Practical benefits of intelligence are discussed in Science 299 (2003), 192-3. On behavioural  genetics, Science 298 (2002), 71-2.

Behavioural complaints in persons who underwent predictive testing for Huntington disease in the Netherlands are reported in JMG 39 (2002), 857-62. Coping style and genetic counseling for cancer are discussed in JMG 39 (2002), 689-94, 865-71. Education can help GPs offer counseling, JMG 39 (2002), 779-81. On French experience with genetic testing for cardiomyopathy, JMG 39 (2002), 741-6. A general review on genetic testing is NEJM 347 (2002), 1867-75. The ethical management of genetic testing is discussed in Lancet 360 (2002), 1685-8; JMG 39 (2002), 863; NatGen 32 (2002), 553-4.

A discussion of genetic testing is in Bennet, T., "Fundamental problems and solutions concerning genetic testing", Alpha Omega 5(2), 337-362. There are also papers on medical genetics in New Genetics and Society 21 (2002), 261-302, 327-50; Medicine, Healthcare and Philosophy 1 (1998), 207-8. A survey of the use of informed consent forms in genetic counseling is J. Genetic Counseling 10 (2001), 3-24. A paper on informed consent in pharmacogenomics is in The Pharmacogenomics  J. 2 (2002), 343. A series of papers on population screening for hemochromatosis is Genetic Testing 4 (2000), 95-232. Risk perceptions of participants in familial hypercholesterolemia screening are reported in AJMG 116A (2003), 136-43.

Genetic technology as a threat to deafness is discussed in Medicine, Healthcare and Philosophy 1 (1998), 209-15. Prenatal diagnosis for deafness is possible, J. Genetic Counseling 10 (2001), 121-31. Ethics of cochlear implants are discussed in Theoretical Medicine 22 (2001), 337-49.  The preferences of women for prenatal diagnosis are discussed in Genetic Testing 4 (2000), 23-32. Breast cancer screening is discussed in J. Genetic Counseling 10 (2001), 185+, 215-32; Genetic Testing 4 (2000), 43+, 265-72. Reasons for declining cancer genetic counseling are described in J. Genetic Counseling 10 (2001), 25+. The Jewish carrier screening panel is discussed in Genetic Testing 5 (2001), 83-5. On carrier screening for cystic fibrosis, Genetic Testing 5 (2001), 111+. Disclosure of Huntington's Disease to family members is reviewed in BMJ 326 (2003), 331-3; Genetic Testing 4 (2000), 359-64.

A study of focus groups of professional challenges of patients with genetic concerns is J. Genetic Counseling 10 (2001), 97+. On genetics and public health, JAMA 289(2003), 99-100. Attitudes towards enrolment of children in genetic susceptibility research in the USA is reported in AJMG 116A (2003), 117-28, 315-23.

A discussion of the compulsory health screen before marriage in China is Hesketh, T. "Getting married in China: Pass the medical first", BMJ 326 (2003), 277-9. Book reviews of Genetic Politics are in Lancet 361 (2003), 267. Geneticisation of medicine is discussed in Medicine, Healthcare and Philosophy 1 (1998), 235-43; 4 (2001), 19-30, 37-46. Eugenics is discussed in Nature 421 (2003), 213-4; AJPH 93 (2003), 11; Medicine, Healthcare and Philosophy 4 (2001), 1-3, 5-17. Recent trends in disability in USA are discussed in JAMA 288(2002), 3137-46. The benefits of general intelligence are discussed in  Science 299 (2003), 192-3. The search for genes for longevity is reviewed in Nature 421 (2003), 789-90.

The commercialisation of home genetic test kits is discussed in JAMA 289(2003), 45-6; NatMed. 9 (2003), 147;  J. Biolaw & Biobusiness 3 (1999), 29-39; Medicine, Healthcare and Philosophy 1 (1998), 217-24. OECD and genetic testing is discussed in J. Biolaw and Biobusiness 4 (2001), 34-6.

 Ethics of genetic testing are discussed in Alpha Omega V (No. 3, 2002), 473-97. A series of papers on human genetics and ethics from a Bogota conference in 2002 in English and Spanishare in Revista Latinoamericana de Bioetica 4 (Jan. 2003), 1-130. Attitudes towards genetic testing of children are reported in Pediatrics 110 (2002), 360-3. A review on ethics and genetics in Latin America is in Developing World Bioethics 2 (2002), 11-20; and on a Mexican case, SSM 56 (2003), 1933-46. The UK Human Genetics Commission has warned against selling genetic test kits direct to the public, BMJ 326 (2003), 781; (You can download the 78 page report).

A book review of Einstein in Berlin is in Nature 422 (2003), 811-2. An essay on race and genomics is in NEJM 348 (2003), 1166-70.  The question of whether there is a right to be born is discussed in JME 28 (2002), 65-7. Sex selection is debated in JME 28 (2002), 335-6. Discussion of whether a lesbian couple who is deaf can create a child like them is in JME 28 (2002), 283-8. Identities of deaf persons in South Asia are recorded in Sociology of Health and Illness 24 (2002), 21-45. Ways that people live with Huntington's disease are discussed in Brit. J. Health Psychology 7 (2002), 449-62. The question of selecting embryos to be free of early onset Alzheimer's disease is debated in JME 28 (2002), 290. On saviour siblings conceived to help an older child, JME 28 (2002), 289. In general on genetic counseling, Sociology of Health and Illness 24 (2002), 66-88; NEJM 348 (2003), 1066-7. A Dutch court has awarded damages for a disabled child for being born, BMJ 326 (2003), 784. Self-esteem in women with disabilities in the USA from a survey is discussed in SSM 56 (2003), 1737-47. On genes and social justices, Bioethics 16 (2002), 72+.

Results of a US survey are in Parrott, RL. Et al. "Diversity in lay perceptions of the sources of human traits: Genes, environments, and personal behaviors", SSM 56 (2003), 1099-109. The question of mapping the criminal mind is raised in NS (26 April 2003), 47-9. The question of whether our freedom evolves is discussed in a book review in Nature 423 (2003), 17-8. Book reviews of Nature via Nurture are in Nature 422 (2003), 814-5; Lancet 361 (2003), 1483. Determinism is discussed in Science 300 (2003), 56-7. Gene expression varies with changes in phenotype and traits, Nature 422 (2003), 269-70, 297-302.

Carrier testing in hemophilia A is discussed in AJMG 119C (2003), 3-10. Genetic testing in the family is discussed in AJMG 119C (2003), 1-85. Mistakes in CF tests may have lead to false positives with couples deciding to terminate pregnancy based on the incorrect data, NS (3 May 2003), 3-6. On mistakes in prostrate cancer screening, AJPH 93 (2003), 779-85. The reasoNS why women accept or decline BRCA tests is discussed in AJMG 119A (2003), 201-9, 266-72. On counseling, BMJ 326 (2003), 1247-50; MJA 178 (2003), 77-81. InteractioNS of genetic counselors with genetic testing labs is discussed in AJMG 119A (2003), 297-301. Participation of geneticists in genetic advocacy groups is reviewed in AJMG 119A (2003), 89-92.

A new book is Glasa, J., ed., Ethics of Human Genetics. Challenges of the (Post) Genomic Era (Strasbourg: Council of Europe, 2002, 228pp.). It includes a number of papers on medical genetics and ethics from Eastern Europe. On genetics and nursing, Nursing Ethics 10 (2003), 255-68, 323-5; and the text of a statement from the International Council of Nurses is at . A study from a group finding mixed understanding is Bates, BR. Et al. "What does "A gene for heart disease" mean? A focus group study of public understandings of genetic risk factors", AJMG 119A (2003), 156-61. Another survey of understanding is in SSM 56 (2003), 2211-20.

A summary of the report, Contraception for People with Mental Retardation (Health Council of the Netherlands, 2002) is Network 18 (May 2003), 7-9. A paper on genetic screening and disability rights in the UK is in CQHE 12 (2003), 235-41. The narrowing of the terms of the AmericaNS with Disabilities Act in the courts in USA is reviewed in HCR 33 (March 2003), 9-10; AJPH 93 (2003), 540-4. An essay on Carrie Buck and eugenics is HCR 33 (March 2003), 14-7. On eugenics and infanticide, National Catholic Bioethics Quarterly 3 (2003), 265-74. Human nature is discussed in papers in NS (24 May 2003), 37-56. On gene-environment interaction, SSM 56 (2003), 2327-42; NatMed. 9 (2003), 501.

A claim that knowing that we are genetically prone to addiction may help people quit smoking is discussed in NS (9 Aug. 2003), 16. Genes for alcoholism are being studied in students, Science 301 (2003), 1180-1. A special issue on disability ethics is NZ Bioethics J. 4 (June 2003), 2-32. A paper on disability and statistics in China is Med. Anthropology Quarterly 17 (2003), 5-24. A community study of the outcome of people with open spina bifida at age 35 is BMJ 327 (2003), 1365-6.

Ethics of genetics research is discussed in Science & Engineering Ethics 9 (2003), 409-18; Nursing Ethics 10 (2003), 255-68, 323-5; BME 188 (April 2003), 3-5; NEJM 349 (2003), 562-9; SSM 57 (2003), 403-12. Tributes to Dorothy Wertz are in HCR 33 (July 2003), 45. One her last papers to be written is Wertz, DC. "Ethical, social and legal issues in pharmacogenomics", The Pharmacogenomics J. 3 (2003), 194-6. The UK Dept. of health in a report Our inheritance , our future, has called for greater understanding of genetics by GPs in the UK, BME 189 (June 2003), 3-4. The duty to warn relatives of genetic disease is discussed in AJMG 120A (2003), 374-80. A study of seeking genetic information on deafness but not for purposes of termination is in JMG 40 (2003), e79.

Genomic profiling for lifestyle choice is discussed in NatGen 34 (2003), 347-50. Predictive genomics is discussed in Lancet 362 (2003), 340-2. Pretest prediction of BRCA gene mutations is discussed in JMG 40 (2003), 503-10. A review is Wald, NJ. Et al. "Cystic fibrosis: Selecting the prenatal screening strategy of choice", Prenatal Diagnosis 23 (2003), 474-83. CF population screening is discussed in AJMG 120A (2003), 199-208. Predictive testing for fragile X syndrome in female carriers of the gene is more reliable with gene expression studies on hair root analysis than by DNA testing, JMG 40 (2003), 377-9. As discussed in the ART news section, embryo selection for saving ailing siblings is being accepted, Current Biology 13 (2003), R541-3. US parent attitudes to newborn screening are discussed in AJMG 120A (2003), 209-14.

The relationship between eugenics and infanticide is discussed in National Catholic Bioethics Quarterly 3 (2003), 265-74. A report on a Dutch project on parenthood and contraception for people with mental retardation is Network 18 (May 2003), 7-8.

There have been delays in Japanese Millennium projects due to ethical issues of genetics, APBN 7 (2003), 1011. The Erice Declaration of the Ethical Principles of Pharmacogenomic Research are in Law and the Human Genome Review 17 (2002), 223-8. A report from the French National Bioethics Committee on Sharing Genetic Information with Family Members is Les Cahiers 36 (2003), 5-12. On genetic testing in Huntington disease and CF, Scientist (20 Oct. 2003), 24-5. On BRCA testing,  Science 301 (2003), 591-3. A book review essay is Macer, D. "Genetic choices", Bioethics 17 (2003), 567-72. In general on genetics and ethics, Croatian Medical J. 44 (2003), 533-7.

Arguments against the selection of embryos as tissue donors are in BME 190 (2003), 13-6; and arguing for see EJAIB (Nov. 2003). Patient organizations in France are discussed in SSM 57 (2003), 2127-36.

A book review of Original Intelligence is Nature 424 (2003), 17. Nature versus nurture is discussed in  Science 301 (2003), 1554-5.

A new book is Wyndham, Diana, Eugenics in Australia: Striving for National Fitness (Galton Institute, 2003, 406pp., ISBN 0950406678).  China has tightened its genetic regulations, Asian Wall Street J. (13 Oct. 2003), A1, A5. A paper exploring eugenics in China is Su Baoqi & Macer, DRJ., "Chinese people's attitudes towards genetic diseases and children with handicaps", Law and the Human Genome Review 18 (2003), 191-212. A history of the Cambridge Eugenics Society from 1911-13 and 1930-33, and reasons for its demise are in Galton Institute Newsletter 48 (June 2003), 1-8. On Nazi corruption, Nature 424 (2003), 650. Hitler used penicillin made by the Allies after his bombing in 1944, NS (6 Sept. 2003), 8. A review on Lysenkoism and the VII International Congress of Genetics, Genetics 165 (2003), 1-9. On the dangers of inbreeding, NS (18 Oct. 2003), 38-41. On race and medicine,  Science 301 (2003), 594-6.

A paper on Pakistani attitudes towards carrier testing for thalassemia in adults is Community Genetics 5 (2002), 120-7. Attitudes towards screening for late onset genetic diseases in Flanders are reported in Community Genetics 5 (2002), 128-37. A Netherlands Health Council report on screening for Down syndrome in early pregnancy is Network 19 (March 2004), 24-5. Maternal education in France modified the age-related increase in prevalence of Down syndrome, Prenatal Diagnosis 24 (2004), 79-82. Discussion of screening for cancer susceptibility is in NEJM 349 (2003), 2080-1; Annual Report of GenomeCanada 2002/2003; BMJ 328 (2004), 148-51; JMG 40 (2003), 807-14. The dilemmas for a Jewish rabbi discussing prenatal diagnosis are discussed in NS (14 Feb. 2004), 44-7. Genetic counseling is discussed in BMJ 327 (2003), 1038-40; AJHG 74 (2004), 393-4; NZFP 30 (2003), 420-4. An obituary to Dorothy Wertz is in NatGen 4 (2003), 295. Providing audiotapes and extra material minimizes anxiety in more persoNS about the testing, Prenatal Diagnosis 23 (2003),1060-7.

A new supplement report is Parens, E., "Genetic differences and human identities. On why talking about behavioral genetics is important and difficult", Special Supplement, HCR 34 (Jan. 2004), S1-36. The ethics of funding and controlling genetic research on behaviour is discussed in light of the Nuffield Council report in Genes, Brain and Behaviour 2 (2003), 321-31. On ethics of pharmacogenetics, BIOForum Europe 6 (Nov. 2003), 319-21; a review of the Nuffield Council report is BME 193 (2004), 18-21. Population genetic screening is debated in Eur. J. HG 11 (2003), 903-5; MJA 179 (2003), 517-8. A series of papers in English and French on genetics and ethics are in IJB 14 (Sept. 2003), 11-226; also papers in English in Developing World Bioethics 3 (2003), 103-85; J. Clinical Ethics 13 (2002), 316-23; NEJM 349 (2003), 1870-3.

Ethics of preimplantation diagnosis is discussed in JME 29 (2003), 213-6, 217-9; JAMA 291 (2004), 927+. Discussion of the ethics of selecting children is in Bioethics 18 (2004), 72-83; JME 29 (2003), 369-70.

On eugenics, IJB 14 (Sept. 2003), 17-32; Monash Bioethics Review 20 (April 2001), 11-43; BMJ 328 (2004), 411. Gene culture coevolution is seen between cattle milk protein genes and human lactase genes, NatGen 35 (2003), 311-7. IQ and economics is discussed in Heredity 92 (2004), 359-62. On nature versus nurture, NatGen 35 (2003), 199-200. Past treatments for homosexuality are discussed in BMJ 328 (2004), 427-32; also see NS (17 Jan. 2004), 36-9. Disability is discussed in CQHE 13 (2004), 34-40. Stutterers have sued over a research study, BME 191 (2004), 3-4. Racism in USA is discussed in Amer. J. Bioethics 3 (Spring 2003), 1-11. LessoNS from the Holocaust for teaching nursing ethics are given in Nursing Ethics 11 (2004), 138-49.

Ethical issues in DNA profiling from in vitro embryos are discussed in Law and the Human Genome Review 19 (July 2003), 15-20. Genetics race and ethnicity are discussed in BMJ 328 (2004), 1070-2. A review paper is Fairchild, AL. "Policies of inclusion. Immigrants, disease, dependency, and American Immigration policy at the dawn and dusk of the 20th century", AJPH 94 (2004), 528-39. On ethics of racial profiling, Philosophy and Public Affairs 32 (2004), 131-70; also pp. 171-92, Modern Law Review 67 (2004), 1-15. Prevention and genetic testing for breast cancer is discussed in SSM 58 (2004), 1085-96; and on cancer screening in general, JAMA 291 (2004), 1835-6; NS (1 May 2004), 52.
A description of the community engagement and sampling in 4 countries for HapMap is in International HapMap Consortium, "The International HapMap project", Nature Reviews - Genetics 5 (2004), 467-475. Review of genetics research is discussed in Nature Reviews-Genetics 5 (2004), 332. A qualitative study of couples' experience of predictive testing for Huntington disease in Australia is AJMG 126A (2004), 161-9, 170-82; also, SSM 58 (2004), 137-49. In general on genetic testing and counseling in USA, SSM 58 (2004), 1427-42; and in Australia, SSM 58 (2004), 1699-707. Attitudes of unaffected siblings of parents with PKU are described in AJMG 126A (2004), 156-60. The US FDA has warned against commercial prenatal ultrasound videos, BMJ 328 (2004), 853.
The cost utility of prenatal diagnosis is discussed in Lancet 363 (2004), 1164-5. Wrongful birth actioNS are defended in J. Law & Medicine 11 (Nov. 2003), 230-8. Use of preimplantation diagnosis for selecting stem cell donors is debated in J. Law & Medicine 11 (Nov. 2003), 327-39. The use of preimplantation diagnosis in Japan for sex selection was reported in 3 cases by Dr. Tetsuo Otani, against regulations, and is discussed in Bioethics Examiner 8 (Spring 2004), 1-3. A review of ideas behind the issuance of guidelines on bioethics in China is Doering, O. "Chinese researchers promote biomedical regulations: What are the motives of the biopolitical dawn in China and where are they heading?", KIEJ 14 (2004), 39-46. On disability in Norwegian society, SSM 58 (2004), 1837-48. A picture of Nazi demography is in Science 304 (2004), 203.

           Culture is important to consider when introducing genetic services, SSM 59 (2004), 235-48. Discussion of immigration ethics in Italian is in Bioetica e Cultura XIII (2004), 125-46. A paper analyzing eugenic ideas is H.G. Wells The Time Machine and George Bernard Shaw Man and Superman is in Galton Institute Newsletter 51 (June 2004), 1-16. An exhibition review on eugenics is in Lancet 363 (2004), 1741-2. The nature-nurture debate is discussed in  Science 304 (2004), 397-9. Some autistic persons can joke and break the stereotypes, SA (June 2004), 24-5; BMJ 328 (2004), 1139.

A paper on ethics of immigration in Italian is in Bioetica e Cultura 13 (2004, No. 1), 125-46. Genohype is discussed in GeneWatch 17 (July 2004), 6-10. The identification of individual predisposition to violence is debated in J. Law, Medicine & Ethics 31 (Spring 2004), 24-33. A comparison of the use of BRCA1 between USA, UK and France is in GeneWatch 17 (May 2004), 3-5, 10. Social contract theory applied to BRCA1 testing is discussed in KIEJ 14 (2004), 115-42. Genetic counseling and prophylactic surgery for breast or ovarian cancer is discussed in Lancet 363 (2004), 1841-2; JAMA 292 (2004), 796-8; SSM 59 (2004), 553-65; JME 30 (2004), 227-30. Patients' genes influences the QOL after chemotherapy, JAMA 292 (2004), 673-4. Case studies from New Zealand of the issues in the work of cytogeneticists are in NZBJ 5 (June 2004), 13-24. The ownership of Guthrie test samples in New Zealand is reviewed in NZBJ 5 (June 2004), 25-33.

Persons perceptions are surveyed in Kuppermann, M. et al. "How do women of diverse backgrounds value prenatal testing outcomes?", Prenatal Diagnosis 24 (2004), 424-9; Leung TN. et al. "Attitudes towards termination of pregnancy among Hong Kong Chinese women attending prenatal diagnosis counseling clinic", Prenatal Diagnosis 24 (2004), 546-51; Leung, KY. Et al. "Randomised trial comparing an interactive multimedia decision aid with a leaflet and a video to give information about prenatal screening for Down syndrome, Prenatal Diagnosis 24 (2004), 613-8. False positives are a problem in Down syndrome screening, Prenatal Diagnosis 24 (2004), 389-92. The psychological impact of genetic testing for familial hypercholesterolemia is discussed in AJMG 128A (2004), 285-93.  Education in genetics for physicians is also important, JMG 41 (2004), 518-22; BMJ 329 (2004), 2-3.

The introduction of clinical genetics tests is discussed in J. Law, Medicine & Ethics 31 (Spring 2004), 106-10; BMJ 329 (2004), 4-6. A genetic mutation that means gefitinib works in some patients is described in NatMed. 10 (2004), 553.  Community narratives in research are discussed in Davis, DS., "Genetic research and communal narratives", HCR 34 (July 2004), 40-9. Other papers on community consultations are in Science and Engineering Ethics 10 (2004), 457-82. On the Estonian database project, CQHE 13 (2004), 254-62. On race in genetics, Nature Reviews - Genetics 5 (2004), 559. A report from an EU citizen's meeting on human genetic testing is in Science and Engineering Ethics 10 (2004), 579-88. Some recommendations on ethics of genetic testing in Europe are in BME 197 (April 2004), 8-11. Models for integrating pharmacogenetics into society are discussed in Nature Reviews – Genetics 5 (2004), 663-75; Pharmacoeconomics 22 (2004), 495-8. On the ethics of pharmacogenetics, Nature Reviews – Genetics 5 (2004), 676-80.  Ethics of research into rare genetic disorders are discussed in BMJ 329 (2004), 288-9. Genetic counseling in Fragile X is discussed in JAMA 291 (2004), 2945.

A book review of War Against the Weak is JAMA 292 (2004), 868-9. Embryo screening to arrange tissue matching is debated in F&S 82 (2004), 290-1; JAMA 292 (2004), 803-5. Preimplantation diagnosis is discussed in F&S 82 (2004), 302-3; NS (12 June 2004), 6; (24 July 2004), 7; The Scientist (21 June 2004), 26-7. President Bush has announced plans to screen the entire US population for mental illness, BMJ 329 (2004), 292-3. A study of immigration policy against Mexicans and Filipinos in LA 1910-1940 is in AJPH 94 (2004), 932-9. The African Society of Human Genetics has been launched, NatGen 36 (2004), 544. On genetic determinism, The Scientist (24 May 2004), 32. On IQ, Science 305 (2004), 774. A framework for gene testing in Europe is described in Current Biology 14 (2004), R363-4; and in general, The Scientist (21 June 2004),64; Sociology of Health and Illness 26 (2004), 102-6, 107-9. Feminist discourse on sex selection is discussed in Bioethics 18 (2004), 205-20.

To Genetic Screening Methodology News
To DNA Fingerprinting News
To Genetic Disease Marker News
To Gene Therapy News
Back to Main News index