pp. 409-412 in Bioethics in Asia

Editors: Norio Fujiki and Darryl R. J. Macer, Ph.D.
Eubios Ethics Institute

Copyright 2000, Eubios Ethics Institute All commercial rights reserved. This publication may be reproduced for limited educational or academic use, however please enquire with the author.

 

F19. Results of a 37-Nation Survey of Geneticists' Ethical Views

Dorothy C. Wertz.

The Shriver Center, Waltham, MA, USA

In 1994-1996 my colleague John C. Fletcher and I surveyed all accessable geneticists in 37 nations with regard to the most important ethical problems in medical genetics. We included all nations with 10 or more practicing geneticists in 1993. (Some areas of the world, such as sub-Saharan Africa, have few geneticists.) In each nation, a geneticist colleague complied a list of practicing geneticists and distributed and collected the questionnaires, which were answered anonymously. In the United States, all persons certified by the American Board of Medical Genetics (including Master's-level counselors) as of 1992 were included.

Questionnaires included a range of 50 ethical questions, mostly in the form of case vignettes, covering confidentially and disclosure, false paternity, preemployement testing, pregnant women with genetic conditions who put their fetuses at risk, indications for prenatal diagnosis (including sex selection), carrier testing, reproductive options, parenthood for persons with disabilities, testing of children, professional and personal attitudes toward abortion, nontreatment of handicapped newborns, and attitudes toward disability. The geneticist questionnaire took approximately 2 hours to complete. There were translations into 12 languages: Chinese, Czech, French, German, Hebrew, Japanese, Polish, Portuguese, Russian, Spanish, Thai, and Turkish. Primary care physician questionnaires used common medical parlance to describe genetic disorders (e.g., Turner syndrome instead of 45,X). All questionnaires were anonymous. They did, however, include basic sociodemographic data,, both professional and personal. Questionnaires included spaces after most questions, where respondents were asked to write, in their own words, their reasons for choosing a particular answer (from a checklist) to a question.

Of 4594 geneticists asked to participate, 2903 (63%) responded, including 1084 (70%) of 1538 in the United States (Table 1). Of 852 primary care physicians sampled, 499 (59%) responded. Of approximately 700 patients who received questionnaires from clinic staff before their initial counseling session, 469 (about 67%) returned them. (Data reported here are preliminary and include only the first 409.)

Around the world, 50% of M.D. geneticists and 55% of Ph.D. geneticists were women. Among U.S. geneticists, 45% of M.D.'s, 59% of Ph.D.s, and 93% of Master's- level counselors were women; 94% were white, 4% Asian, 1% black, and 1% Hispanic (Wertz, 1997). The median age was 44 years, with 12 years in the practice of genetics. Both worldwide and in the United States, they saw a median of 6 patients a week.

The questions that geneticists reported as most difficult ethically appear in Table 2. Respondents were asked to list the three most difficult, so percents do not add to 100.

The general results of the survey appear under the eleven headings below, followed by a list of published material resulting from the survey.

1. Most geneticists would give purposely biased information after prenatal diagnosis, except in English-speaking nations and parts of Western Europe.

The "nondirective" genetic counseling that professionals support in North America and the United Kingdom is an aberration from practice in most of the world. Counseling is especially directive in China, India, Eastern Europe, and Cuba, but majorities would also be directive in other nations in Latin America, Asia and Western Europe. Most of the directiveness occurs through presentation of purposely slanted information that encourages parents to terminate a pregnancy or carry it to term without the counselor suggesting this directly. Pessimistic counseling (toward abortion) exceeds optimistic counseling for cystic fibrosis, sickle cell anemia, Down syndrome, spina bifida, neurofibromatosis, XXY, and achondroplasia (dwarfism). Although some counselors justify their directive approach by arguing that patients expect and even ask for advice (this may be true), most people do not expect to receive purposely biased information presented as "fact". Few laypeople know enough about genetic disorders to question the veracity of information presented by experts. If a counselor is going to be directive, an open approach would be more ethical.

Table 1: Survey Response Rates

Country Invited to participate Responded %Responding

Argentina 20 19 95

Australia 26 15 58

Belgium 40 15 38

Brazil 131 74 56

Canada 212 136 64

Chile 25 16 64

China 392 252 64

Colombia 27 15 55

Cuba 96 14 16

Czech Republic 137 81 59

Denmark 54 28 52

Egypt 2 2 100

Finland 53 22 42

France 102 75 74

Germany 418 255 61

Greece 12 12 100

Hungary 78 36 46

India 70 23 33

Israel 27 23 85

Italy 23 22 96

Japan 174 113 65

Mexico 89 64 72

Netherlands 41 26 63

Norway 18 9 50

Peru 16 14 88

Poland 250 151 60

Portugal 22 11 50

Russia 66 46 69

South Africa 21 16 76

Spain 82 51 62

Sweden 15 12 80

Switzerland 10 6 60

Thailand 28 22 66

Turkey 30 22 73

UK 217 102 47

USA 1538 1084 70

Venezuela 22 16 73

Total 4594 2903 63

2. Most geneticists around the world take a pessimistic view of disability.

Most geneticists thought that society would never provide enough support for people with disabilities and also that effects of some disabilities could never be overcome, even with maximum social support. Few thought that people with severe disabilities "make society more rich and varied," but interestingly, majorities in most nations, including China, would support the right of people with disabilities to become parents, even if their disability would be inherited by their children.

Outside the United States, women geneticists were more pessimistic about disability than men, perhaps because they sympathized with mothers. Most geneticists agreed that the bulk of care for a child with a disability falls on the mother.

3. There is a growing tendency to respect patient autonomy.

Comparison with results of an earlier survey in 1984-85 (Wertz and Fletcher, 1989) suggests a world wide trend toward honoring people's requests (for example, prenatal diagnosis for an anxious woman without medical indications) and supporting their decisions even if the professional disagrees with a decision. Many geneticists now believe that withholding any service is a denial of patients' rights.

4. In most of the 19 nations previously surveyed in 1984, more would perform prenatal diagnosis for sex selection or would refer than in 1984.

Exceptions were India (which now has a federal law against sex selection), France, and Sweden. In the United States, despite much discussion of the ethics of sex selection, 72% would perform prenatal diagnosis or refer, compared with 62% in 1984-85. Increased willingness to do sex selection appears to arise from increased respect for patient autonomy.

5. As in 1984, there was no consensus about telling relatives at genetic risk against a patient's wishes. Except in English-speaking nations and Western Europe, majorities would tell relatives.

This was one of the most difficult issues in the questionnaire. National commissions, starting with the U.S. President's Commission in 1983, have recommended that confidentiality may be overridden if all efforts to persuade the patient to disclose have failed, and if there is a high risk of serious harm to family members and if the information would be used to prevent or lessen harm. The American Society of Human Genetics has recently issued a "Points to Consider" statement on this issue, recommending disclosure to relatives if a disorder may be treated or prevented.

6. Geneticists in English-speaking nations would not test children for adult-onset disorders. In southern and Eastern Europe, Asia, and Latin America, most would test children at parents' request.

The adult-onset disorders listed on the questionnaire were Huntington disease and Alzheimer disease. There are no medical benefits to a child from testing for these, and there is a possibility of stigmatization by family and friends and discrimination by future employers and insurers. The Clinical Genetics Society (U.K.) and American Society of Human Genetics have recommended postponement of tests for children unless there is a medical benefit to the child in the near future. Postponing a test until the child becomes an adult and then letting him or her decide about whether to be tested also preserves the child's own autonomy.

7. There was worldwide consensus that employers, insurers, and schools should not have access to genetic information without an individual's consent.

8. Eugenic thinking is alive and well in many developing nations, especially in Asia and Eastern Europe. However, most geneticists reject involuntary sterilization.

Geneticists in 19 nations agreed that reducing the frequency of deleterious genes in a population should be an important goal of genetics. Usually this is considered an eugenic goal. Most appeared to favor an individual eugenics, however, based on the pessimistic counseling that they provided. Few approved of government intervention though premarital carrier testing or compulsory sterilization.

9. There is a growing tendency toward full disclosure of disease-related information to patients.

In 1984-85, geneticists split 50-50 about whether to disclose her XY (male) genotype to a woman seeking infertility treatment. In 1994-96, far more would disclose.

10. Most geneticists would not disclose an accidental finding of nonpaternity to a husband, even if he asks.

Many respondents said that nonpaternity was none of their business, unless someone had specifically requested paternity testing. They would give people the answer to the disorder or question for which they were tested, and avoid any mention of other findings such as nonpaternity. They believe that preserving the family was more important than telling the truth.

Interestingly, patients (who were surveyed in the United States) took a different view. Close to 100% (mostly women) thought that the geneticist should tell a man who asked.

11. There were few reports of refusals of employment or insurance outside the United States. In the United States, reports were few when compared with patient volume.

Conclusion

There is a need for national and international statements to help reach consensus. Such statements should include the views of consumers.

Table 2: Most Difficult Questions % listing

Question 1994

Which disorders to abort 41

Parenthood for persons with disabilities 28

Sex selection 29

Disclosure to relatives 25

Huntington disease questions 17

Disclosure to spouses 24

Third party access to genetic information 17

Bibliography of Publications Resulting from Survey

1. Wertz, D.C. (1997) Society and the Not-So-New Genetics: What Are We Afraid Of? Journal of Contemporary Health Law and Policy 13(2): 299-346.

2. Wertz D.C. (1997) International perspectives on privacy and access to genetic information. Microbial and Comparative Genomics 2(1):33-41.

3. Wertz D.C. (1997) Is there a "women's ethic" in genetics? A 37-nation survey of providers. Journal of the American Medical Women's Association 52(1): 33-38.

4. Wertz D.C., Fletcher, J.C. (1997) Ethical and social issues in prenatal sex selection: A survey of geneticists in 37 nations. Social Science and Medicine 46(2): 255-273.

5. Mao X, Wertz D.C. (1997) China's genetics services providers' attitudes toward several ethical issues: A cross-cultural survey. Clinical Genetics 52:100-109.

6. Cohen P, Wertz D.C. (1997) Genetic counseling practices in Germany: A comparison between East German and West German geneticists. Journal of Genetic Counseling 6(1): 61-80.

7. Wertz, D.C. (1997) Editorial Comment: Genetic Counseling in Mexico. American Journal of Medical Genetics 75.

8. Wertz D.C. (1998) International Perspectives. In: Angus Clarke (ed.), The Genetic Testing of Children. Oxford: Bios Scientific Publishers, in press.

9. Wertz D.C. (1998) Genetic Testing of Children and Adolescents. In: Justine C. Burley and John Harris (eds.), A Companion to Genetics: Philosophy and the Genetic Revolution. Oxford: Basil Blackwell, in press.


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