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;
BMJ
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
265: 2836-43.
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.
AIDS
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.