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 ޣ6 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: veatchr@guvax.georgetown.edu; 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: NHawkins@law.ualberta.ca).

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 <http://www.ornl.gov/TechResources/ 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 <http://ncgr.org./elsi/elsi.tc.html. 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, < http://ncgr.org./gpi/Index.html, 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 <http://www.charm.net/~rafi/rafihome.html.

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: jbrown@welchlink.welch.jhu.edu, <http://infonet.welch.jhu.edu/policy/genetics>.

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, <http://www.geneletter.org/>. 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 <http://www.scicomm.org.uk/ 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 3