A court case in the U.K. recently was avoided when the public prosecutor decided
not to prosecute an obstetrician who carried out a selective reduction abortion in
1989 on a handicapped fetus at 27 weeks, leaving the "healthy" fetus to be born;
302: 1043. On another UK legal case, on the birth of a handicapped child see Lancet
337: 1193. See also R.R. Bovbjerg et al., "Obstetrics and malpractice. Evidence on
the performance of a no-fault system", JAMA
In a special edition on the Human Genome project in the AJLM there are several papers on the general question of genetic screening. These include: A. Lippman, "Prenatal genetic testing and screening: constructing needs and reinforcing inequities", AJLM XVII: 15-50. The increasingly genetic perspective that modern discussions about disease take, is discussed. The ASHG statement on clinical genetics and freedom of choice is on AJHG 48: 1011. The Council of Europe Recommendation No. 90, 13, on prenatal genetic diagnosis and associated genetic counseling is presented in French in IJB 2: 13-22.
On the issue of sex selective abortions, the latest figures on the Indian population suggest that the large number of private clinics that are performing such abortions may be having a significant effect. The ratio of females to males has fallen from 1981 when there were 934 per 1000 males, to 929 in the 1991 census (of a total of 844 million); Nature 350: 645. There may be other sexist factors also, the sex ratio has fallen since 1900 when there were 972 females per 1000 males.
Time magazine (17 June 1991), 30-4, carries a lead story on the ethics of the case where a child was conceived in order to become a bone marrow transplant donor for a sick child. They also show the results of public opinion data, in which 47% of the public agreed with the idea of conceiving a child as a donor. They also asked questions on the use of fetal tissue, and transplants in general from living donors.
On the issue of newborn genetic screening see C.M.Laberge & B.M.Knoppers, "Newborn genetic screening: ethical and social considerations for the nineties", IJB 2: 5-12. A series of principles to guide the practice are presented, in view of the great expansion predicted in the use of predictive testing.
The funding for the study of cystic fibrosis in the USA, as trial screening programs has been arranged, including money from the Genome Project. About US$1 million is expected to be used this year; Science 252: 382. A survey of what people think about this screening in Britain is E.Cobb et al, "What do young people think about screening for cystic fibrosis", J. Medical Genetics 28: 322-324. They propose the start of carrier screening in high schools, based on the high level of support for such screening among 14-16 year olds they surveyed. The economics of prenatal screening is mentioned in Lancet 337: 1042. A 40pp. supplement to the JRSM 84, No. 16 focuses on cystic fibrosis. It includes papers on the treatment of the disease, and on the use of genetics, p. 2-6, and on the general question of neonatal screening, p. 7-9.
The subject of medical anthropology, how different people's explain ill health, is discussed in Lancet 337: 1013-6, 1080-3, 1144-7, 1205-9, 1270-2. The designation of mental illness is discussed in BMJ 302: 979-80. Treatment of phobias with behavioural exposure is discussed in BMJ 302: 1037-8.
The behaviour of people in chosing a mate is still exerting one of the largest influences on the incidence of genetic disease. A review is A.H.Bittles et al., "Reproductive behavior and health in consanguineous marriages", Science 252: 789-94. In many areas of Asia and Africa there are still very high rates (20-50%) of consanguineous marriages, and they are socially prefered.
A Vermont court in the USA has held that DNA fingerprinting is sufficiently reliable to be used as evidence in a criminal trial; AJLM XVII: 183-4. A commentary on the use of DNA fingerprints by E.S.Lander is in AJHG 48: 819-23. The summary of the OTA's report on Genetic Witnesses is in IJB 2: 29-32.
The privacy of information is important everywhere. A paper on the employee/r questions is L.B. Andrews & A.S.Jaeger, "Confidentiality of genetic information in the workplace", AJLM XVII: 75-108. This is basically a legal paper, discussing the legal procedures involving the different people involved in workplace screening. The parameters for a model law are suggested. Another paper is L.Gostin, "Genetic discrimination: The use of genetically based diagnostic and prognostic tests by employers and insurers", AJLM XVII: 109-44. Also on employment testing see IJB 1 (Dec 1990), 239-44.
On April 25, the Danish Parliament resolved to ban the use of genetic testing for employment, insurance and for pensions. The bill should be drafted by the end of 1991; Lancet 337: 1340; Biotechnology 9: 508.
The ethics of genetic testing extends to those in the past. A panel of "experts" in the USA recently supported the case for the screening of some of former President Lincoln's cells, to determine whether he did suffer from Marfan's syndrome; Washington Post (3 May 1991), A3. The tissue will be obtained from blood, hair and skull samples, and there are still several steps to pass, before the testing occurs, maybe in early 1992. Lincoln has no living relative, so they could not be asked. In the future other leaders may be tested genetically, to see the influence of their genes upon behaviour, and that makes this a worrying precedent.
In France there has been a huge family tree found for people descended from a couple that suffered from manic depression and juvenile glaucoma, which importantly is also associated with blindness if untreated. There is now the ethical problem of how to tell the people who are carriers of the disease, or possible carriers; Science 252: 368-9; BMJ 302: 868-9. However the French privacy law prohibits doctors warning the people who need treatment to avoid glacoma-linked blindness.
Important for the question of privacy are screening and access to records; Lancet 337: 1276-7. A paper on privacy laws and medical research, especially epidemiology, is in MJA 154: 158-9. Another common problem is the disclosure of patient details in medical publications, and the problems of how to maintain patient privacy. This is discussed in BMJ 302: 1182, 1168; JAMA 265: 2720. The results of a public survey regarding the use of general health screening in Britain are in JRSM 84: 280-3. Most were in favour of it. The patient and medical consultant attitudes to access to patient health records was also measured; JRSM 84: 284-7. See also S.M.J.Chafe, "The legal obligation of physician's to disclose information to patients", CMAJ 144: 681-8, and BMJ 302: 1291.
The Universal Movement for Scientific Responsibility has proposed to add a new article to the Universal Declaration for Human Rights. This is that scientific knowledge should be used only to promote the dignity and preserve the integrity and the future of human beings, but no one can hinder the acquisition of scientific knowledge. There is also several subprinciples, including "Human genetic inheritance, given our present level of knowledge, should not be modified", and that "The human body cells, tissues or organs has no price, and thus cannot be a source of profit". A fuller description in French is in IJB 2: 23-7.
A new book on the issues associated with the use of medical genetics is N. Fujiki et al., eds., Medical Genetics and Society (103pp., US$35, Kugler Publications, P.O.Box 516, 1180 AM Amstelveen, The Netherlands, ISBN 90-6299-077-0). It includes papers presented during a panel discussion on Education and Ethics in Medical Genetics held in Fukui, Japan, August 3rd, 1990). It includes discussion of the situation in different countries on education of medical genetics, and on international perspectives in medical ethics. It is a useful book because of the international views and situation presented in it.
A recent report by the Science Council of Canada is Genetics in Canadian Health Care (132pp., 1991, free of charge from: The Publications Office, Science Council of Canada, 100 Metcalfe Street, Ottawa, Ontario K1P 5M1, Canada). A 13p English/ 14p French summary is also available, and the report is No. 42. It covers a background in genetics, in how genetics can be applied, and will be increasingly applied, and encourages the readers to apply the techniques. It includes consideration of the ethical problems, the need for education. It summarises the current genetic screening services in Canada, and the legal situation. It encourages more genetics research. It is a good report, and is free of charge.
There are still strong sex preferences in many cultures. A result of one study is E.K. Campbell, "Sex preferences for offspring among men in the Western area of Sierra Leone", J. Biosocial Science 23: 337-42. See P.A. Rogerson, "The effects of sex preselection on the sex ratio of families", J. Heredity 82: 239-43, for a mathematical model of the effects.
Consanguity is still a major problem in many parts of the world. A comment on this is in Lancet 338: 85-6. A paper describing the results of plant experiments is S.C.H. Barrett & D. Charlesworth, "Effects of a change in the level of inbreeding on the genetic load", Nature 352: 522-4.
Denmark is banning the use of genetic testing information, though the legislation is still being worked out by the Ministry of Employment; Biotechnology 9: 508. It is hoped that other countries will follow their example. In the USA, there have been state regulations considered in California, Oregon and Texas. Any such ban, needs to include all nonsymptomatic medical information, so that no discrimination is allowed using any detection system. Meanwhile, the regulations that were drafted to implement the 1990 Americans with Disabilities Act, have some loopholes which the NIH Genome Ethics Committee has asked be closed before the final regulations are enacted; Nature 351: 684.
In New York state there is a regulatory law on the standards used in genetic testing which is also necessary; Biotechnology 9: 508-9. On forensic testing see BMJ 303: 4-5. The US Congress is considering the use of genetic testing in forensic cases, aimed at improving the quality of court evidence; Nature 351: 684; Science 252: 1603; SA (Aug 1991), 9.
Letters on the relationship between genetics and public health, and justice, are in AJHG 48: 1201-4. There is also a letter on the ethics of a genetic program for myotonic dystrophy; AJHG 48: 1204-6. On the confidentiality problems of centralised databases see BMJ 303: 206-7.
There are several letters concerning the link between blood pressure and skin colour (EEIN 1: 38), JAMA 265: 2957-8. There are many variables, such as city of residence, which also had a major effect on the blood pressure, so it is difficult to reach conclusions. Another paper on racial variations in disease incidence is J.M. Tielsch et al., "Racial variations in the prevalence of primary open angle glaucoma", JAMA 266: 369-74, editorial comment on p. 410. Black Americans were found to be at higher risk which may reflect a genetic susceptibility to glaucoma. On the familial transmission of alcoholism see BMJ 303: 72-3. To remind us of the past, a new book is Philip R. Reilly, The Surgical Solution. A History of Involuntary Sterilization in the United States (190pp., US$20, John Hopkins University Press 1991), is positively reviewed in Science 252: 1863.
Comments on the safety and efficacy of cholesterol screening are in Lancet 337: 1574-5, and focusing especially on screening in children see JAMA 265: 3003-5. See S. Havas et al., "Results of the Massachussetts model systems for blood cholesterol screening project", JAMA 266: 375-81.
A discussion of suffering is in E.J. Cassell, "Recognising suffering", Hastings Center Report (May/June 1991), 24-31, and in a review of Stanley Hauerwas's book, Naming the Silences: God, Medicine, and the Problem of Suffering (154pp., US$10, Michigan: Grand Rapids 1990), in Hastings Center Report (May/June 1991), 32-33.
The results of a Huntington's disease testing program are presented in M.A. Nance et al., "Protocol for genetic testing in Huntington Disease. Three years of experience in Minnesota", AJMG 40: 518-22. They followed international ethical guidelines, with some clinical flexibility and found the service could be performed successfully. An editorial comment is; M.R. Hayden, "Predictive testing for Huntington Disease: Are we ready for widespread community implementation?", AJMG 515-7. Another comment is C. Pritchard et al., "The end in sight for Huntington Disease?", AJHG 49: 1-6, and on the mapping of the gene to a region 2.5Mb in size see AJHG 49: 7-16. Because of the future applications of susceptibility and presymptomatic screening tests, genetic counselors should be careful to develop a good method of practice, and tread carefully. However, it is encouraging to see some programs working out practical approaches considering the ethical and social effects of such testing. Another dominant disease, but one in which people at risk have a poor understanding of their own risk is described in D. Ravine et al., "Perceptions of genetic risk in individuals with a one in two chance of developing autosomal dominant polycystic kidney disease", MJA 154: 689-91.
There has been some debate about the genetics of alcoholism. A report on a predictive study of alcohol use among White American boys, 13-16 years old, is J.R. Udry, "Predicting alcohol use by adolescent males", J. Biosocial Science 23: 381-6. The study suggested a genotype-environment interaction, and the use of either biological (e.g. testosterone level) or social variables alone could not predict behaviour well. Studies in the Archives of General Psychiatry 48: 655-63, 664-5, on the dopamine receptor gene, support earlier claims for a genetic link to alcoholism; Science 253: 379. However, studies in JAMA 266: 1793-1800, 1801-7, 1833-4, suggest that this allele is not directly linked to alcoholism but is associated with a number of behavioural disorders in general. See also AJHG 49: 501-2. A comment about alcoholism in the USSR is entitled "Do Dna: Alcoholism in the Soviet Union", JAMA 266: 1211-2.
Recent research suggests that homosexuality is associated with the size of particular brain structures in the hypothalamus; Science 253: 1034-7. The number of brains studied in that paper is small, so there is some suspicion about the study; Science 253: 956-60; Nature 353: 13; Lancet 338: 688-9. It does not determine whether homosexuality is solely genetic, or environmentally-induced, and it does not mean that homosexual behaviour is beyond the control of the will. For a comment on transexualism see Lancet 338: 603-4.
A study on the possible higher IQ of Japanese children over British children is in a paper: R. Lynn & T. Shigehisa, "Reaction times and intelligence: a comparison of Japanese and British children", J. Biosocial Science 23: 409-16. The faster reaction times of Japanese 9 year old children than British children could hint at a more efficient processing of information at the neurological level. More studies should be made, the difference in scores represents about 10 IQ points, but the Japanese were found to have higher variability than the British children.
On education in human genetics and genetic counselling see several articles in AJHG 49: 488-502, and on the history of genetics see AJHG 49: 473-87. On prenatal screening see S. MacIntrye & A. Sooman, "Non-paternity and prenatal genetic screening", Lancet 338: 869-71. The actual published data for this are rare, so the commonly cited figure of 10% has no solid backing. On the implications of consanguineous marriages among British Pakistanis see J. Medical Genetics 28: 720-3. On the management of prenatally diagnosed fetal abnormality see MJA 154: 644-7, 155: 135.
On sex selection and sexism especially against girls, a recent WHO report is commented on in Lancet 338: 813. The Indian parliament has introduced a new law with penalties, to try to stop prenatal sex selection; Nature 353: 594. On sex selection methods see HCR (Sept/Oct 1991), 4. On sexism in science see Nature 353: 205-6.
Another allelic association with malarial resistance has been discovered, described in A.V.S. Hill et al., "Common West African HLA antigens are associated with protection from severe malaria", Nature 352: 595-600. The leucocyte class I antigen (HLA-Bw53) and HLA class II haplotype (DRB1*1302-DQB1*0501) account for a similar disease reduction as the sickle cell anemia allelic trait. For comment see Nature 352: 565-6; Lancet 338: 503. The major histocompatibility complex has been found to influence mice mating patterns; Nature 352: 619-24. The ethnic distribution of the myotonic dystrophy gene is used to draw a human family tree; Lancet 338: 642-3. However, the epidemiologic studies showing that US blacks get more cancer has been shown, as many thought, to be associated with poverty more than anything else; Science 253: 260.
A debate on whether non-directive genetic counseling can be obtained is in a paper;
A. Clarke, "Is non-directive genetic counselling possible?", Lancet
338: 998-1001. Because of the situation between the counselor and the person seeking
genetic counseling, it may not be possible to be completely non-directive. It is
not a fault of the counselor, but a feature of social situation. However, the style
of counseling can certainly alter the degree of directiveness. Some letters in response
appear in Lancet
338: 1266-8. Also on social applications of medical genetics is BMJ
303: 977-9; 1412-3.
In the USA the law to attempt to protect people from genetic information being used against them is discussed in Nature 353: 686-7; SA (Dec 1991), 13. The supporters of the bill include J. Rifkin, J. Watson and W. Anderson, and many others, united by the cause to protect people from discrimination. However, in California, the governor vetoed the bill that the state government had passed to avoid genetic discrimination, and use of data by insurance agencies and employers (EEIN 1: 79); Science 254: 522. A report on genetic screening and insurance policies is summarised in Lancet 338: 1263. A letter criticising a recent series of Nature editorials, by D. Macer is in Nature 354: 347. It drew the satisfactory statement by the editor's that "Nature's line is that the care of the disadvantaged, genetically or otherwise, is a public responsibility that cannot be met by the regulation of private insurance companies".
A paper on genetic testing and human rights is P.-H. Imbert, "Tests Genetiques et droits de l'Homme", IJB 3: 158-69. There is a short English summary of this paper. It starts by looking at genetic fingerprinting as an example, which raises delicate questions of ethics, and challenges our ideas of what humans are.
A paper discussing public attitudes towards genetics is W.R. Hendee, "Public attitudes towards human genetics research: endorsement, indifference or opposition", IJB 3: 245-9. However, no statistics are presented, rather it calls for increased education about science, particularly in the USA. On the topic of genetic discrimination and implementation of the American's with Disabilities Act in the USA see a statement of recommendations by a working group on ethical, legal and social issues, in BME (Oct 1991), 8-9. A review of a 1989 Dutch Report on the implications of genetic screening is in Bioethics Research Notes 3: 31-2.
The acceptance of CVS in an area of the Netherlands is reported in AJMG 41: 236-8. Education of human genetics is discussed in AJHG 49: 1107-8, 1119-26, 1127-8. The issue of CF screening is discussed in N.J. Wald, "Couple screening for cystic fibrosis", Lancet 338: 1318-9. The economic aspects of prenatal diagnosis are the theme of a letter in AJHG 49: 1100-1.
On non-paternity and prenatal tests see Lancet 338: 1151, which reports that the rate of non-paternity detected with CF tests has been about 1%, much lower than is commonly reported.
A review of eugenics is K.L. Garver & B. Garver, "Eugenics: Past, present, and the future", AJHG 49: 1109-18. They encourage the inclusion of eugenics in education. I have also found much interest in the history of eugenics from biology students in Japan. It should be more widely talked about. A book review of Philip R. Reilly, The Surgical Solution: A history of involuntary sterilization in the United States (John Hopkins University Press 1991, 190pp., US$20), is in NEJM 325: 1386-7. There have been many recent papers on racial and sexual differences in disease and in health care in the USA today, see; NEJM 325: 1412-7, 1418-22, 1440-2, 1597-600; JAMA 266: 2049, 2244, 2674, 2746-9, 2984; Lancet 338: 1116;
Consanguineous marriages are discussed in Science 254: 1434-5, looking at a Hindu population in South India. Also on genetics and demography see a book review in AJHG 49: 1102. The
There is debate over the use of PCR-techniques for sex-testing of women athletes in the Olympics; Nature 353: 784.
A comment on the genetic links to alcoholism (EEIN 1: 79) is in Science 254: 200.
The genetic link to psychiatric disorders and behaviours such as alcoholism will continue to be difficult to prove, but we must be careful of deterministic thinking; BMJ 304: 11. A new study in the Archives of General Psychiatry suggests that the genetic component of homosexuality is between 30-70%; Science 255: 33. It is based on twin studies. On autism see Nature 355: 123, and on the growing number of supposedly mental diseases which may in fact only be diagnoses, see Lancet 338 (1991), 1574-6.
The debate on the Olympic sex testing continues; NS (18 Jan 1991), 14; Nature 355: 10. There are calls for the practice to be discontinued, as it may only exclude XY females and may not actually find any males. It is said that about 1 in 500 woman athletes at the Olympics may be barred from competition because of the test results.
On the link between sweet foods and genes that cause diabetes in well fed societies, J. Diamond, "Sweet Death", Natural History (Feb 1991), 2-6.
On the subject of eugenics, and R.A. Fisher see S.J. Gould, "The smoking gun of eugenics", Natural History (Dec 1991), 8-17. On a book review related to eugenics in France see JAMA 266 (1991), 3486-7, and another review in NEJM 325 (1991), 1816. On the use of race in medical research see JAMA 267: 259-63, 268-71, 275-9. On hypertension in black and whites see Lancet 339: 28-9.
A letter on non-directive genetic counseling is in Lancet 338 (1991), 1524, as are letters on CF screening. The Nuffield Council on Bioethics in the UK has set up a working party which will look at the ethical issues of genetic screening; Lancet 339: 300. On consanguinity and genetic disease in Saudi Arabia see Social Science & Medicine 33 (1991), 1295-1302.
There are several further comments on the French scandal involving HIV-infected blood; BME (Dec 1991), 13-15; JAMA 266 (1991), 3477-82. On the origins of AIDS see Nature 355: 305. On AIDS in the former Soviet Union see; BMJ 304: 71; in Africa see Lancet 339: 238.
There have been claims that the world AIDS programme lack vision; NS (1 Feb 1991), 14. On AIDS activism and health politics see NEJM 326: 128-33.
See a special issue of Public Health Reports 106 (Nov-Dec 1991) on HIV and AIDS. On poverty and AIDS see NS (4 Jan 1991), 3. On critical care of patients infected with AIDS see JAMA 267: 541-7. The results of trials of AZT doses in Scandanavia have found that 400-600mg daily doses for patients with advanced HIV infection or AIDS are best; BMJ 304: 13-7. These doses are lower than the current recommended doses. On AZT treatment in children see Lancet 339: 15-9.
There was recent false press claims on the success of a drug in clinical trials, acyclovir when combined with AZT, for treating HIV-infected patients in the UK; Nature 355: 102. On the awareness in the USA of HIV testing and treatment; JAMA 267: 27-8; and on attitudes that make people seek or refuse HIV tests see MJA 155 (1991), 586-9. On early diagnosis of perinatal infection see JAMA 266(1991), 3474-5. The UK government has decided to give compensation to HIV blood victims who were not hemophiliacs; Guardian (17 Feb 1991), 3. On financing AIDS patients in the USA see JAMA 266 (1991), 3404.
A discussion on the court cases and evidence presented in the case of the HIV-infected dentist who passed the virus onto his patients is in Science : 392-4. On the risks to dentists of Hepatitis C infection see Lancet 338 (1991), 1539-42.
The method of HIV transfer to babies from their mothers appears to occur during delivery, according the the results of J.J. Goedert et al., "High risk of HIV-1 infection for first born twins", Lancet 338 (1991), 1471-5. Although some infants may be infected in utero, it appears that infection may occur as the baby encounters the cervix and birth canal. This means that cesarian section before delivery may substantially lower the risk of maternal transmission, though still some fetuses are infected. On the issue of screening pregnant women for HIV in the UK see letters in the Times (17 Feb 1991), 13.
The issue of partner notification is addressed in S.E. Landis et al., "Results of a randomized trial of partner notification in cases of HIV infection in North Carolina", NEJM 326: 101-6. The found that it was ineffective to leave notification up to the person, but health counselors were much more effective and notification and they may have been able to encourage the adoption of less risky behaviour. On HIV and sexually transmitted diseases see MJA 155: 584-6.
The NIH is supporting clinical studies on cystic fibrosis testing, education and counseling, Human Genome News 3: 1-2. The debate on when to begin population screening for cystic fibrosis continues; AJHG 50: 438-40. Genetics and public health is in BMJ 304: 721; Nature 356: 365-6; NEJM 326: 494-5.
The ethical problems of Huntington's disease testing and presymptomatic testing are discussed in AJHG 50: 460-4; M.A. Chapman, "Canadian experience with predictive testing for Huntington disease: Lessons for genetic testing centers and policy makers", AJMG 42: 491-8; M. Bloch et al., "Predictive testing for Huntington disease in Canada: The experience of those receiving an increased risk", AJMG 42: 499-507; M. Higgins et al., "Predictive testing for Huntington disease in Canada: Adverse effects and unexpected results in those receiving a decreased risk", AJMG 42: 508-15. The duty to disclose to relatives is debated in AJMG 42: 758-60.
The links between genes and alcoholism continue to be debated; SA (April 1992), 16-7; Science 255: 538; JAMA 267: 651-2. Letters on genes and intelligence are in JMG 29: 71. Papers on racial differences in health results in the USA, which may depend on social conditions more than genetics, include; BMJ 304: 795, JAMA 267: 1345-8, 1384, 1473-7, 1637-44; NEJM 326: 733-6;
The cause of psychiatric disorders is reviewed in B.P. Dohrenwend et al., "Socioeconomic status and psychiatric disorders: The causation-selection issue", Science 255: 946-52. A survey study of moral reasoning in children is K.A. Schonert & G.N. Cantor, "Moral reasoning in behaviourally disordered adolescents from alternative and traditional high schools", Behavioural Disorders 17 (1991), 23-35. On biological and genetic contributions to violence see Psychological Bulletin 109 (1991), 125-9.
The public in Japan support the use of genetic testing, as shown in survey results presented in my book (advertised on the back page). The public attitudes to genetic testing in the USA are surveyed in several papers; E. Singer, "Public attitudes toward genetic testing", Population Research and Policy Review 10 (1991), 235-55; B. Sjogren, "Future use and development of prenatal diagnosis. Consumer's attitudes", Prenatal Diagnosis 12: 1-8; T.J. Tymstra et al., "Women's opinions on the offer and use of prenatal diagnosis", Prenatal Diagnosis 11 (1991), 893-8; S.R. Miller & R.H. Schwartz, "Attitudes toward genetic testing of Amish, Mennomite, and Hutterite families with cystic fibrosis", AJPH 82: 236-42; D.C. Wertz et al., "Attitudes toward abortion among parents of children with cystic fibrosis", AJPH 81: 992-6. Sociocultural issues in genetic counseling; JMG 29: 140.
The fear of future prenatal pressures on women is discussed in R.I. Solomon, "Future fear: prenatal duties imposed by private parties", AJLM XVII (1991), 411-34. See also BMJ 304: 785-6, 924-5. A study performed in the LA region on the rate of Down syndrome births (0.017) is M.G. Wilson et al., "Birth prevalence of Down syndrome in a predominantly Latino population: a 15 year study", Teratology 45: 285-92. The survival of children in Italy is different between the south and north; P. Mastroiacovo et al., "Survival of children with Down syndrome in Italy", AJMG 42: 208-12.
The need for ethical research activity in genetics research is discussed in K.E. Tranøy, "Ethics, genetics and science policy", BME (April 1992), 13-20. A review of a German conference on the subject of genetics is in Bioethics 6: 177-180.
A new book on the subject of eugenics is Pauline Mazumdar, Eugenics, Human genetics and Human Failings; The Eugenics Society, its sources and its critics in Britain (Routledge 1992, 373pp., 40). It is based on a study of documents from the Eugenics Society in the U.K., and is critical of the development of the eugenics society in the U.K. It is reviewed in Nature 356: 641-2. On the costs to society of genetic welfare see JAMA 267: 2535-6.
The U.K. Nuffield Council working party on genetic screening has been set up, and the objectives and members are listed in BME (April 1992), 5. The question of genetic screening for cystic fibrosis is discussed in Nature Genetics 1: 153. See also BMJ 304: 1321, NEJM 326: 1090-4; Lancet 339: 1401.
In Japan , several newspapers have recently published articles with a positive tone on genetic testing, which appears to be a sudden change of editorial policy, and represents growing interest in genetic screening. A description of APC screening made front page news in the Yomiuri Shimbun (1 Sept 1992), 1. Another paper, Nikkei Shimbun (22 Aug 1992), 11, also published an article, as did the English newspaper Japan Times (2 Sept 1992), 17. Also some journalists have visited me regarding the topic. The articles do mention the dangers of insurance discrimination in the USA, but are generally positive. The mention of genetics which has been a taboo for so long, is a positive sign - and a debate may be widening in Japan.
A new book has been published from the British Medical Association, Our Genetic Future. The Science and Ethics of Genetic Technology (Oxford University Press 1992, 263pp., 8). It is easy to read, and covers agricultural and medical issues of genetics. A note is in Lancet 340: 45.
The p53 gene, mutations of which are linked to cancer risk , is being screened for in some relatives of patients with cancer. Ethical guidelines are being developed in the USA for this and pedigree research in general; Human Genome News 4 (May 1992): 7. A new report is OTA, Cystic Fibrosis and DNA Tests: Implications for Carrier Screening; Nature 358: 529. They predict widespread CF testing as inevitable.
An occasional paper of the Galton Institute is a report from a workshop, B. Modell & A.M. Kuliev, "Social and genetic implications of customary consaguineous marriage among British Pakistanis" (52pp., available for 5 from the Galton Institute, 19 Northfields Prospect, Northfields, London SW18 1PE, U.K.). A letter on consanguinity in the Shetland Islands is in Human Genetics 89: 462; and a report on consanguineous marriages in Jordan is in AJMG 43: 769-75. They found first cousin marriages in 32% of households.
The Singapore eugenics program is said to be having some effect; Time (24 Aug 1992), 13. Since 1984 there has been an increase of 25% in the number of Singaporean graduate men who marry graduate women, so that now half of them marry fellow graduates. Is this really eugenics? In another case of recent debate, the NIH froze a grant to a conference "Genetic factors and Crime", sue to protests from critics which claimed that it may be racist; Nature 358: 357. The conference programme is being altered to address these concerns. Also on eugenics see; AJHG 51: 222; F. Akhter, "The eugenic and racist premise of reproductive rights and population control", IR&GE 5: 1-8; B. Schei, "The routine use of ultrasound in antenatal care: is there a hidden agenda?" IR&GE 5: 13-20. In Washington D.C. in April 1993, a new holocaust museum will open; JAMA 268: 575-6.
The results of interviewing 34 genetic counselors in US cities regarding sex selective abortions are reported in B. Meredith Burke, "Genetic counselor attitudes towards fetal sex identification and selective abortion", SSM 34: 1263-9. Positive attitudes of patients to cystic fibrosis screening (see also the above section on disease markers) are in E.K. Watson et al., "Attitudes towards prenatal diagnosis and carrier screening for cystic fibrosis among parents of patients in a paediatric cystic fibrosis clinic", JMG 29: 490-1. A study of decision-making behind abortions is P.G. Pryde et al., "Determinants of parental decision to abort or continue after non-aneuploid ultrasound-detected fetal abnormalities", Obs. & Gyn. 80: 52-6. A review of Wertz and Fletcher's attitude survey is in Occupational Health Review (April/May 1992), 8-11.
Papers on Huntington's disease with relevance to testing include: P.S. Harper, "The epidemiology of Huntington's disease", Human Genetics 89: 365-76; S.G. Post, "Huntington's disease: prenatal screening for late onset disease", JME 18: 75-8; G. Terrenoire, "Huntington's Disease and the ethics of genetic prediction", JME 18: 79-85, letters on p. 47; A. Tyler et al., "Presymtomatic testing for Huntington's disease in the United Kingdom", BMJ 304: 1593-6; 1585-6. In the UK less people came for testing than expected, and 248 tests were performed (151 had lower risk and 97 had higher risk as a result). On presymtomatic screening; BMJ 305: 267-8.
The fetal vs. mother balance is discussed in M. Swartz, "Pregnant woman vs. fetus: a dilemma for hospital ethics committees", Cambridge Quarterly of Healthcare Ethics 1: 51-62.
Plans to survey the diversity of human genes and populations are being made, with financial support being provided by several agencies; Science 256: 1629. A background paper on global analysis of genetic markers and languages is L.L. Cavalli-Sforza et al., "Coevolution of genes and languages revisited", PNAS 89: 5620-4. Of interest to evolutionary studies is J.H. Holland, "Genetic algorithms", SA (July 1992), 44-50.
The IAAF banned sex testing in May, but the IOC still used it in Barcelona Olympics. Papers on it are in NS (4 July 1992), 39-42; Nature 358: 447.
The problem of defining dyslexia is discussed in SA (July 1992), 18-9. Dogs are providing some model on obsessive behaviour; SA (July 1992), 14-5. The problems of defining thinking, with application to artificial intelligence are raised in A.S. Monin, "On the definition of the concepts thinking, consciousness, and conscience", PNAS 89: 5774-8. Reductionist approaches to psychiatrics are discussed in H.W. Harris & K.F. Scghaffner, "Molecular genetics, reductionism, and disease concepts in psychiatry", J. Med. & Phil. 17: 127-53.
The proceedings of the 27th annual symposium of the Galton Institute, 1990, have been published as A.H. Bittles & D.F.Roberts, eds., Minority Populations. Genetics, Demography and Health, Macmillan Press 1992, ISBN 0-333-54694-6, 276pp. Many papers discuss the effects of consanguinity , with studies from Finland, South East Asia, Britain, Germany, and Russia, especially looking at the practices among ethnic minority populations and health strategies to reduce the incidence and impact of genetic disease. Consanguinity as a cause of fetal malformations in Israel is reported in AJMG 44: 1-6.
Ethical and legal issues arise from genetic counseling for mitochondrial DNA encoded genetic disease. Each egg contains about 2,000 mitochondria and it is not possible to determine whether the fertilised egg will have the disease or not. One possible method to overcome this would be to transfer the nucleus from an egg suspected of having a mitochondrial genetic disease into another egg which does not, nuclear transfer; BME (Sept 1992), 7. However, nuclear transplantation is usually considered genetic engineering, and would be illegal in the UK.
A new OTA report has been released, Cystic Fibrosis and DNA Tests: implications of carrier screening, reviewed in Lancet 340: 478. They predict routine screening is likely within this decade. See also a letter in Lancet 340: 490-1; J. Public Health Medicine 14: 257-63. The attitudes of people towards this are reported in L. Denayer et al., "Reproductive decision making of Aunts and Uncles of a child with cystic fibrosis: Genetic risk perception and attitudes toward carrier identification and prenatal diagnosis", AJMG 44: 104-11. less than half of these people would abort a fetus suffering from cystic fibrosis. A letter on non-paternity and genetic counseling is in Lancet 340: 607.
A short paper on the use of the words "abnormal" and "normal" in human genetics is in BME (Sept 1992), 16-7. It asks whether we have bad or good genes, and looks at labelling . Some of the issues in psychiatry are discussed in L. Hartmann, "Reflections on humane values and biopsychological integration", Amer. J. Psychiatry 149: 1135-41. A book review related to the question of the environmental effects on intelligence is in Nature 358: 634; and on the allure of genetic explanations see an editorial in BMJ 305: 666. The genetics of obesity are discussed in Lancet 340: 881-2, while in men, but not women, marital status appears to be related; SSM 35: 915-23.
A book review of The Nazi Doctors and the Nuremburg Code, is in Science 257: 1290-1. Claims that the German Government's decision to deport gypsies to Romania are related to eugenics and racial attacks against refugees in Germany are discussed in New York Times (19 Sept 1992), 1, 4. The discussion of the sterilisation of mentally handicapped is a controversial issue in the European Parliament; Lancet 340: 780-1. A review of P. Callow, Soviet & Western Psychiatry, is in NS (19 Sept 1992), 44. The use of psychosurgery in Australia and New Zealand is discussed in MJA 157: 17-9. The diagnosis of depression is discussed in JAMA 268: 1018-24. A definition of alcoholism is reported in JAMA 268: 1012-4.
The effects of Huntington's disease testing are reported in A. Tibben et al., "DNA testing for Huntington's disease in The Netherlands: A retrospective study of psychosocial effects", AJMG 44: 94-9. Attitudes in Bulgaria are reported in the use of phenylketonuria screening there; JMG 29: 656-8. Clinical genetics teaching in the UK is surveyed in JMG 29: 724-5.
The NIH-sponsorred conference on genetics and crime has been cancelled due to the controversy and claims that it may be racist; Nature 359: 266; NS (26 Sept 1992), 4; GEN (1 Oct 1992), 3, 12. Looking at the question of racial attitudes, examination of public opinion survey data is discussed in C. Steech & H. Schuman, "Young white adults: did racial attitudes change in the 1980s?", Amer. J. Sociology 98: 340-67. Determining the racial origins of whites and blacks in the USA is discussed in AJHG 51: 678-81. The racial relationships with the time of diagnosis of breast cancer are related to socio-economic factors; AJPH 82: 1383-5; Lancet 340: 904-5. Discrimination in France towards disabled people seeking employment is reported in SSM 35: 951-8.
A principle of quantum mechanics may make it easier to retain privacy as discussed in Science 257: 752-3.
Suggestions for weighing the interests of medical insurance companies against the interests of individuals are made in N.E. Kass, "Insurance for the Insurers. The use of genetic tests", HCR 22 (6), 6-11. The basic message is broader sharing of risks is needed for justice - of course the extension of this is national health insurance. A following paper reaches a similar conclusion by arguing health care is a fundamental good, T.H. Murray, "Genetics and the moral mission of health insurance", HCR 22 (6), 12-17. A report of the NIH-DOE task force on genetics and insurance is in Human Genome News (Sept 1992), 5. Genetic discrimination and the Americans with Disabilities Act is discussed in AJHG 51: 895-905. A survey suggesting the problem is not significant yet in the USA is J.E. McEwen et al., "A survey of state insurance commissioners concerning genetic testing and life insurance", AJHG 51: 785-92; BMJ 305: 1244.
A study suggesting presymptomatic testing for Huntington's disease has positive psychological effects for those both positive or negative for the disease is in NEJM 327: 1401-5, 1449-51.
Discussion of genetic testing and ethical issues is in Biotechnology 10: 1394-6; AJHG 51: 918-9, 922-3, 1161-3; Fetal Diagnosis and Therapy (Dec. issue); JAMA 268: 1767-71. The different selective uses of information about genetic disorders given before prenatal testing and after birth of a child should lead us to develop better educational materials; AJHG 51: 936-7. The role of a nurse in helping Down's syndrome children grow to a normal height is discussed in Pediatric Nursing (Sept/Oct 1992), 485-9. Results of testing educational materials for genetics and bioethical decision-making are in AJHG 51: 924-9.
A paper calling for an integrated approach (Including scientific, social, ethical and legal evaluations) to epidemiology and risk assessment is C.M. Laberge & B.M. Knoppers, "Rationale for an integrated approach to genetic epidemiology", Bioethics 6: 317-30. A survey of the occupations of disabled people in the USA is in AJPH 82: 1517-24.
A population study suggesting the presence of genetic factors involved in alcoholism in women is in JAMA 268: 1877-82; NS (24 Oct 1992), 18. The evidence for a genetic predisposition to alcoholic liver disease is reviewed in Gut 33: 1444-7. On eugenics see AJHG 51: 909-10. The genocide in former Yugoslavia is discussed in Lancet 340: 965. Data looking at racial differences in infant mortality rate is NEJM 327: 1243-4. A discussion of a study of genetics and violence in the USA that has been accused of being racist is Science 258: 212-3 (see also EEIN 2: 81 - where an NIH sponsored conference on genetics and crime had to be cancelled). A twin study suggesting a genetic influence on divorce rate is in Psychological Science (Nov 1992). However, one could say that the environmental influence of living a a particular society has the most significant effect on divorce rates.
The results of a telephone survey of 1,000 public in the USA conducted by Louis Harris & Associates for the March of Dimes (EEIN 2: 71) found that the level of support for genetic testing in the USA has stayed similar between 1986 and 1992. This is interesting, suggesting that some people may continue to reject such techniques in the future also - though the reasoning is unknown. It also makes the comparison to Japan, see D. Macer, Attitudes to Genetic Engineering book (back cover), a more reliable measure with the similar values to the 1986 survey that were used in that book for comparison to 1991 surveys in Japan. One disturbing feature of the results was the lack of importance placed on privacy issues - with many believing that other people deserve to know if someone is a carrier or has a genetic disease; 98% believe the spouse should know, 70% say the other immediate family, 58% think the insurer deserves to know, and 33% think the employer deserves to know. There was also a lack of absolute knowledge about the techniques, as expected. The March of Dimes is using the results to develop educational materials.
The journal Canadian Journal of Physics became involved in debate following its publication of a paper claiming that increased cheating among students was due to decreasing moral values because of neglect by working mothers; Nature 360 (1992), 504. Research suggesting that being nice is due to genes that has been presented at a conference is reported in Science 259: 33. The odds of getting divorced are much higher if your family has a history of divorce, but is this due to genes?; Science 258 (1992), 1734. The effects of biological rhythms on health are discused in JAMA 268 (1992), 3047. The natural frequency of these rhythms is probably genetically controlled, being another genetic influence on behaviour. The comparative mathematics performance of Chinese, Japanese and US children over the last ten years is reviewed in Science 259: 53-8. Several viewpoints on the cancelled Genetics and Crime conference in the USA are in geneWATCH (Nov 92), 1-3. They discuss academic freedom versus responsible science.
A women's view of ultrasonography from a UK survey is in SSM 36: 311-5.
Recommendation No. R(92)3 of the Council of Europe Committee of Ministers to member states on genetic testing and screening for health care purposes is in IJB 3: 255-7. The statement of the American Society of Human Genetics on cystic fibrosis carrier screening is in AJHG 51 (1992), 1443-4. They do not recommend CF screening on a population level until better supportive materials and education is available. Letters on the ethics of screening are in BMJ 305 (1992), 1433-4, 306: 209. A paper on insurance issues in Europe is P.S. Harper, "Insurance and genetic testing", Lancet 341: 224-7. The method for estimating the non-paternity rate from screening is discussed in Lancet 341: 345.
Relationships between socioeconomic status and physical health in studies are reported in SSM 36: 441-50. Differences of morbidity between different races , include letters on alcohol-related deaths of American Indians, JAMA 268 (1992), 3317-8; papers on diabetic end-stage renal disease in US blacks, JAMA 268 (1992), 3079-84; I. Maddocks, "Ethics in Aboriginal research. A model for minorities or for all?", MJA 157 (1992), 553-5, 555-6. On population health see BMJ 305 (1992), 1519-20. The question of why some deleterious genes are so common is asked in Lancet 341: 214. Calls to stop gender testing at the next Olympic games are made in JAMA 269: 357-8.
Huntington's disease testing is not being as accepted by people as it had been predicted. A survey of views of people in the Netherlands on this is in Lancet 340 (1992), 1416. The protocol used for predictive testing in the UK group is described in JMG 29 (1992), 915-8. Letters on the subject of the duty to disclose are in AJMG 44 (1992), 851-3. Papers on this subject are E. Van Leeuwen & C. Hertogh, "The right to genetic information: Some reflections on Dutch developments", J. Med. & Phil. 17 (1992), 381-93; R. Kielstein & H.-M. Sass, "Right not to know or duty to know? prenatal screening for polycystic renal disease", J. Med. & Phil. 17 (1992), 395-405.
The latest figures from the Ministry of Health and Welfare in Japan report that 2.8% of people are officially regarded as handicapped. While this entitles them to financial savings, the stigma associated with being labelled may mean that the true proportion is higher. In the U, disabled persons are calling for a law to protect them; BMJ 306: 287.
The ethical issues of presymptomatic testing in Huntington's disease are discussed in AJMG 45: 694-5, 696-7, 698-710; 46: 154-8, 250-3 NEJM 328: 1046. The ethical issues will alter somewhat with the gene identified, allowing precise investigation of the mutation in any individual, even when family members do not give samples for analysis.
Misperceptions on race and drug use are discussed in a paper and an editorial in JAMA 269: 993-7, 1034. Racial discrimination against doctors from ethnic minorities in the UK is reported in BMJ 306: 668-9, 691-2, 853-4. A study of US hospitals found hispanics with isolated long-bone fractures were twice as likely as non-hispanic whites not to receive pain medication; JAMA 269: 1537-9. A commentary on race, class and infant mortality in the USA is in AJPH 83: 9-12. The need for some race specific biochemical criteria should not be overlooked; O&G 81: 517-22, but it must have a scientific basis and not be misused. On sexual discrimination, and a study of the incidence in US medical schools and in medicine see NEJM 328: 251-2, 322-6; JAMA 269: 965; BMJ 306: 415; see also JRSM 86: 128-9.
Informed consent for ethical screening programs is emphasised in NEJM 328: 438-10. A series of abstracts of papers presented at the 1992 Galton Institute symposium on issues in fetal medicine, including papers on ethical issues, is in the Galton Institute Newsletter (March 1993), 1-3. The commercialisation of clinical genetics is debated in O&G 81: 627-9.
A letter in Nature 362: 583 suggests that because religions involve caring for the sick, beneficence, which also has biological advantage for a species, we may find genes linked to religion . Although we could counter-argue that the type of love shown in many religions is beyond biological advantage, genetics research that links behaviour and genes is no threat to religion. A parent-child study on cognitive abilities and personality as predictors of education and occupational achievement in a Hawaii is in J. Biosocial Science 25: 259-76. The use of twin studies is discussed in Science 259: 1826-8, and especially using the database from US military veterans.
A review questioning meaningful links between the D2 dopamine receptor gene, allele A1, and alcoholism is in JAMA 269: 269. A book review of F.A. Hanson, Testing Testing. Social Consequences of the Examined Life (Univ. California Press, 378pp., US$28) is in Science 259: 1773-4. Mental disorders are discussed in JAMA 269: 844; NEJM 328: 1132-3. On ethical issues in a plan to test a visual device for blind people see Science 259: 1820. A psychological study on children conceived by AID in France has been stopped due to concerns about ethics; NS (20 Feb 1993), 6. It will be reviewed by the national biomedical ethics committee before deciding whether it can resume.
At a recent American Association for the Advancement of Science conference any link between crime and genetics was rejected; NS (27 Feb 1993), 8. One can wonder whether that is too strong a denial of a link, and better approaches to avoiding eugenic discrimination should be developed. Also on genes and crime see SA (Feb 1993), 10-11. A discussion of the ban on homosexuals serving in the US military, although many do, is Newsweek (5 April 1993), 46.
A review is H. Ostrer et al., "Insurance and genetic testing: Where are we now?", AJHG 52: 565-77. A letter on insurance problems and genetic testing is in Lancet 341: 495, 833. A book review of Our Genetic Future is in Genetics Research 61: 75-8; and reviews of books on eugenics are in JAMA 269: 1168-9; AJHG 52: 445-7. Papers on eugenics include AJHG 52: 643-9, 650-2. In April in Washington, D.C., a new Holocaust museum was opened. A review of R. Bowen, Universal Ice: Science and Ideology in the Nazi State (Belhaven, 1993, 189pp., 40) is in Nature 362: 667-8.
Book reviews include: on schizophrenia, Nature 362: 671; of The Savage Within. The Social History of British Anthropology, 1885-1945, see Science 259: 1474-6.
A legal report on the use of insurance company screening in the US by A. Capron is in HCR 23(3), 30-1. A recent report from the working group of the ELSI committee of the NIH Genome project on genetic information and insurance is available from the ELSI branch, NCHGR, NIH, Bldg 38A, Room 617, Bethesda MD 20892, USA. Their report looks at health care insurance, not life insurance. Their conclusions are not surprising for ethicists, and they say no differences should be made in the fees people pay depending on any genetic condition. A summary is in BME (May 1993), 4. On insurance discrimination see AJHG 52: 1018. See also a letter against universal insurance cover in Nature 363: 578. Privacy issues are discussed in P.S. Harper, "Research samples from families with genetic diseases: a proposed code of conduct", BMJ 306: 1391-4.
Attitudes of Dutch people at risk for Huntington's Disease to testing are reported in AJMG 48: 10-6. A letter on diagnosis of late onset diseases is in BMJ 306: 1065. General papers on ethical issues include a paper on counseling families with inherited breast cancer, JAMA 269: 2017-22; and book reviews, AJHG 52: 1020-1; BMJ 306: 1138.
A US Agency for Health Care Policy and Research Panel has recommended that all newborn babies in the US be tested for sickle cell disease irrespective of race; Lancet 341: 1209. The racial testing in the early 1970's caused screening to stop. However, with the intermixing of population in the USA screening of all persons is becoming scientifically more wise - as well as being more socially acceptable. Discussion of universal screening for cystic fibrosis and the social consequences of so many people knowing that they were carriers is debated in BMJ 306: 1580-3, 1584-6, 1558-9; JAMA 269: 1921. On technical issues in CF screening, AJOG 168: 1076-82, Archives of Diseases in Childhood 68: 464-7.
In the popular press there have been many recent papers on racial strife and eugenics . This is not because the problem has changed, but attention has been focused on it. There are hate groups, such as neo-Nazis in the USA on cable television, Time (21 June 1993), 40. On the past history of eugenics see: Nature 363: 409-10; NEJM 328: 1429-31; SA (June 1993), 92-100; Time (3 May 1993), 56; Newsweek (28 June 1993), 53; the new Holocaust Museum in Washington,US News & World Report (26 April 1993), 61-4. Racial friction on campus is rising, US News & World Report (19 April 1993), 52-6. The racial attacks in Germany are debated in Newsweek (14 June 1993), 22-4; Time (14 June 1993), 22-3. Racial discrimination in the USA is discussed in Time (21 June 1993), 32-5; combined with illegal immigrants, US News & World Report (21 June 1993), 26-39. A slave trade among Chinese in the USA is reported in Newsweek (21 June 1993), 8-12. Ethnic cleansing , the new face of racial eugenics is widespread in Africa, Asia and Eastern Europe; Newsweek (19 April 1993), 12-5, (21 June 1993), 18-25.
A general review of legal and ethical issues in psychiatric genetic research is in AJMG 48:17-21. A special issue of the AJMG 48: 1-3+, includes many papers on genes and behaviour. It will publish special issues on this topic in the future also. Included are studies on violence and trauma using Vietnam war veterans suggesting a genetic link, p. 22-7; and genetic studies on schizophrenia and genes, p. 28-35, 36-9, 40-6, 60-2. On the use of the drug clozapine to treat schizophrenia see BMJ 306: 1427-8. On the subject of the usefulness of twin studies in psychiatry see AJMG 48: 47-59; and in general medicine, see Lancet 341: 1008-9. An elderly twin registry is also being established in the USA, which is hoped to include 30-50,000 twins; Science 260: 1239.
The NIH has stopped the grant given to research on the link between crime and genes ; Science 260: 619. Possible future research strategies were discussed at a recent NIH planning meeting; NS (12 June 1993), 7. The research should be less controversial. The NIH spends about US$60 million a year on research into the biological basis of aggression and violence, so there should be some research on ethical aspects. Researchers in the Netherlands have found a link between a mutation in the gene for monoamine oxidase A and a familial history of agrression in males; AJHG (June 1993); Science 260: 1722-3. Such an "aggression gene" stresses the need for further studies of the role of genes and environment in behaviour.
Comments against genetic reductionism by D. Nelkin are in Chronicle of Higher Education (3 March 1993), B1-2, and her book reviews of R. Hubbard & E. Wald, Exploding the Gene Myth (Beacon 206pp., US$24), and R.C. Lewontin, Biology as Ideology: The Doctrine of DNA (HarperPerennial, 128pp., US$10) is Nature 363: 27. They criticise recent promises of genetics and look at social concerns. On the dark side of molecular biology, Nature 363: 13.
On the origins of intelligenece and genius see Newsweek (28 June 1993), 34-9. The study of happiness is reported in Newsweek (24 May 1993), 57. A book review of Molecules and Mental Illness is in Nature 363: 594. The circuitry of a spatial working memory in humans is discussed in Nature 363: 623-5. On the restorative ability of green on the mind see BMJ 306: 1080-1. (You may need to look out on green if you have been reading this newsletter completely!). On nitric oxide, the neurotransmitter, see PNAS 90: 4329-31. Papers on the biological basis of left and right-handedness are in PNAS 90: 3246-50. A gene for left-right symmetry in development (e.g. which side of the body your liver is), has been found and transgenic mice with reversed polarity made; Science 260: 624-5, 679-82.
Sexism in science is brought to the attention more by a special issue of Science 260: 384-430; 275. There are numerous papers. Also on European women scientists see Science 260: 1008-9, 1070, 1231. Women's health is receiving more research funding in the USA also; Science 260: 1063; while a report on racial and sexual discrimination in the NIH has been leaked; Nature 363: 6, 105. Homosexuality is discussed in Newsweek (10 May 1993), 52-3, (24 May 1993), 52, (21 June 1993), 42-6; Time (24 May 1993), 44-5; JAMA 269: 2611-2. The AMA has called for an end to discrimination against homosexual health care workers (and in general of course also). A study suggesting genes influence sexual orientation in women is in Archives General Psychiatry 50: 217-223. A book review of Sexual Science and the Law is in JAMA 269: 2426-7; and of The Sexual Brain is in Nature 363: 505.
A genetic link between a portion of the X-chromosome Xq28 and predisposal in men to male sexual orientation has been found; D.H. Hamer, et al., "A linkage between DNA markers on the X chromosome and male sexual orientation", Science 261: 321-7, 291-2; Lancet 342: 231; NS (24 July 1993), 3, 5; Nature 364: 281, 288-9; BMJ 307: 220, 337-8. They studied 76 homosexual men and found 13.5% of their brothers were also homosexual, much higher than 2% in general. They found more gay relatives on the maternal than paternal side, suggesting the X chromosome, and then suggested this region is linked. It will be tested soon whether this paper stands up to further study.
Our eating preferences may have genetic determinants, suggests a study by J. Rutherford et al in Psychological Medicine (July 1993), in which they looked at 246 pairs of twins, 99 of whom were identical. They suggest body dissatisfaction has a heredibility of 52%, linking anorexia nervosa with genes. Bulimia was suggested to be 28% genetic. The type of amylase genes that an animal possess may also determine eating preferences, PNAS 90: 5257-61; NS (14 Aug 1993), 14.
A general paper is T.M. Powledge, "The genetic fabric of human behaviour ", BioScience 43: 362-7. The search for the alcoholism gene is questioned by R. Hubbard and E. Wald in GEN (July 1993), 1, 33, in an excerpt from their book, Exploding the Gene Myth (Beacon Press, Boston 1993). A review of the link to the dopamine D2 receptor is AJMG 48: 78-82. On sociobiology, see TREE 8: 183-6; and on inheritance of behaviour in twins, BioScience 43: 420-4; and on linkage studies, JMG 30: 634-7, 638-9; AJHG 53: 22-5. Hyperactivity is not just a children's condition, but has life long effects, Arch. General Psychiatry 50: 565-76;Newsweek (26 July 1993), 44-5. A new diagnostic manual for psychiatric diagnosis is soon to be released, JAMA 270: 13-5; Science 260: 1586-7.
Evidence for a human aggression gene is debated in Science 260: 1722-3, see also p.1584. A report showing inheritance of an acquired characteristic in Mongolian gerbils suggests the sex ratio can be altered hormonally in rodent mothers, Nature 364: 671-2, 712.
A proposal is D.C. Wertz & J.C. Fletcher, "Proposed: an international code of ethics for medical genetics", Clinical Genetics 44: 37-43. The WHO guidelines on carrier detection and prenatal diagnosis of hemophilia are in Bulletin of WHO 71: 429-58. General papers on ethics and genetics are Nature 364: 97; IJB 4: 99-101. A paper on how we should ethically judge the efficiency of genetic counseling services is R.F. Chadwick, "What counts as success in genetic counseling?", JME 19: 43-6; and a series of papers on counseling in general is JRSM 86: 421-30. On the psychological consequences of knowing your fetus has Down's syndrome, see BMJ 307: 146-7, 174-6. Inadequate counseling may be a feature of many countries. In a talk at the 17th International Congress of Genetics, Max Perutz argued that genetic screening is acceptable if the information is kept private to the family.
Also on genetic counseling a series of papers of ethical and public attitude focus are in JMG 30: 537, 562-79, 589-92, 670-4; BMJ 307: 262-3. The uptake in the UK among young people for cystic fibrosis tests is about 42%; JMG 30: 538-42; also see p. 543-8, on the psychological effects of prenatal screening on carriers. A review of the OTA report on carrier testing for CF is in AJLM XIX: 177-86. Guidelines on the minimum standards for genetic services are in AJHG 53: 287-9.
An end to life insurance because of genetic testing is suggested in NS (14 Aug 1993), 44-5. On screening for Huntington's disease, JME 19: 121; JMG 30: 549-56, 557-61; AJMG 48: 103-11; BMJ 307: 396-7. In the UK people wanting predictive tests want to have more "certainty" about the future.
A general paper on eugenics is J. Beckwith, "A historical view of social responsibility in genetics", BioScience 43: 327-30. On Nazi Medicine, CMAJ 148: 819-21; and the lasting trauma of concentration camps, BMJ 307: 77-8. Book reviews on race and health are in SSM 37: 691-4; also, AJPH 83: 939-40. A critical letter on the unscientific use of some race words in genetics studies is in AJHG 53: 530-2. In the USA in people over 65 years old, educational status is a better predictor of life expectancy than race, in whites and blacks; NEJM 329: 110-6
Papers on genetic discrimination include, J.E. McEwan et al., "A survey of medical directors of life insurance companies concerning use of genetic information", AJHG 53: 33-45; pp. 16-21, 26-32. The American Disabilities Act is also discussed, see also AJHG 53: 533-6, 541-2. A study of courtesy stigma in parents of 32 autistic children found that parents of more disabled children or younger children were more likely to perceive themselves to be stigmatised, Sociol. Health & Illness 15: 102-20. The European Parliament "resolution on the rights of the mentally handicapped" is in IDHL 44: 367-70.
In Europe in September Insurance companies meet and discussed plans on how to get access to genetic data; Nature 365: 198. In Denmark there is already a law against passing such information to insurance companies, and other countries are planning similar moves. In the USA the Insurance taskforce of the ESLI group of the NIH has called for a temporary moratorium on insurance company requests for genetic test results, but it is not being heeded. If self regulation does not work (and it is unlikely to given the competitive environment), government regulation is needed.
A letter rejecting the need for genethics is D. Macer, "No to Genethics", Nature 365: 102. The genetic linkage to homosexuality , even a possibility, has led to comment in many circles about attitudes to homosexuals. Comments in the Catholic journal The Tablet (24 July 1993) are made by 3 commentators. See also letters in Science 261: 1257-9. A paper surveying concepts of schizophrenia among British and French psychiatrists reports different criteria are used for diagnosis and different treatments, BMJ 307: 489-92. Letters on the relationship between alcoholism and the dopamine D2 receptor gene are in JAMA 270: 1547-8.
Sex selection and female infanticide is discussed in BMJ 307: 875. A survey of French mothers found about 40% supported euthanasia of malformed babies; BMJ 307: 583-4. The survey found that about 80% of pregnant women accepted amniocentesis if their risk of a Down's syndrome baby was 1%, and 75% agreed with abortion, 15% disagreed and 10% did not know (compare to the survey results in the front of the newsletter).
The psychological response of patients to Huntington's disease testing is reviewed in M. Bloch et al., "Diagnosis of Huntington Disease: A model for the stages of psychological response based on experience of a predictive testing program", AJMG 47: 368-74. A letter on the US testing programs is AJHG 53: 785-7. A paper looking at factors which determine Tay-Sachs screening use (see also the above section for a related paper) is A.P. Garber et al., "Determinants of utilization of Tay-Sachs screening", O&G 82: 460-3.
A book review of C.L. Bosk, All God's Mistakes: Genetic Counseling in a Pediatric Hospital, is in HCR 23(4), 41-2. On clinical genetics and primary care, BMJ 307: 816-7. A review of the OTA report on cystic fibrosis carrier screening is in JMG 30: 887-8.
A book on Francis Galton , the founder of eugenics is Milo Keynes, ed., Sir Francis Galton, FRS. The legacy of his ideas, MacMillan 1993, 237pp. It is proceedings of the Galton Institute's 1991 annual meeting. A review which calls the book a whitewash is in Nature 365: 615. Reviews of books on the history of the German genetics community are in Science 261: 1061-2, 1187. A legal perspective on racial violence against Asian Americans is in Harvard Law Review 106: 1026-43. Racial differences in heart disease are discussed in studies suggesting a real difference in NEJM 329: 600-6, 621-7, 656-8. Racial differences in oral glucose screening test results are reported in O&G 82: 479-80. A paper on the genetics of food preference in fruit fly is Genetica 88: 129-36.
A review looking at the development of teaching genetics is J.R.S. Fincham, "Genetics in the United Kingdom - The last half-century", Heredity 71: 111-8. Comments on Ruth Hubbard, Exploding the Gene Myth, are in Newsweek (20 Sept 1993), 57; Biotechnology 11: 1053-4. Also on the general topic of genetics and social issues, Genome 36: 631-9; BMJ 307: 809.
On the ethics of manipulating human genes see Nature 365: 304. A paper in Spanish is R. Cruz-Coke, "Principios eticos para investigar el genoma humano", Rev. Med. Chile 121: 180-3.
A study in Canada found that the number of homicides by step parents is much more than by genetic parents, Science 261: 987. It was suggested that this is to do with evolutionary selfish genes, but perhaps other factors could be also considered.