Dorothy C. Wertz

Ethics and human genetics: a cross-cultural perspective.

This final chapter will discuss these questions: 1) As viewed cross-culturally, what are the major ethical problems in the practice of human genetics today? What are the major social-ethical and policy issues presented to societies and their leaders today and in the near future? 2) What will happen if ethically adequate, unified, and teachable approaches to these issues are not developed? 3) How can the results of this study help to develop such approaches? 4) Is there a viable cross-cultural perspective in ethics for evaluating different cultural and personal approaches to ethical problems in human genetics? Is there a constructive “middle ground” between ethical relativism and ethical absolutism? 5) If so, what evaluations can we make from this perspective about the prevailing approaches to difficult ethical problems in medical genetics today and in the near future? 6) What priority should human genetics and genetic services have in society’s overall medical expenditures? What are geneticists’ responsibilities towards formulating public policies affecting human genetics and reproductive choices? 7) What steps can medical geneticists, policy makers, and public and parent groups take, nationally and internationally, to study social-ethical issues in this field?

Ethical and social issues in prenatal sex selection: a survey of geneticists in 37 nations.

In a recent 37-nation survey of 2903 geneticists and genetic counselors, 29% would perform prenatal diagnosis (PND) for a couple with four girls who want a boy and would abort a female fetus. An additional 20% would offer a referral. The percentage who would perform PND in the United States (34%) was exceeded only by Israel (68%), Cuba (62%), Peru (39%), and Mexico (38%). In all, 47% had had requests for sex selection. There appears to be a trend toward honoring such requests since a similar survey in 1985. This paper discusses reasons for this trend and the ethical dilemmas of refusing patient requests in societies where individual autonomy is stressed.

Fatal Knowledge? Prenatal Diagnosis and Sex Selection

Moral and social arguments weigh heavily against performing medical procedures solely for purposes of sex selection. The medical profession has a responsibility to abandon its posture of ethical neutrality and take a firm stand now against sex selection.

Prenatal diagnosis and sex selection in 19 nations

As part of a study of ethics and human genetics in 19 nations, we surveyed attitudes of 71 medical geneticists in 4 developing nations (Brazil, Greece, India and Turkey), and 611 geneticists in 15 developed nations, using anonymous questionnaires. Overall, 52% in India, 30% in Brazil, 29% in Greece, and 20% in Turkey would perform prenatal diagnosis to select a male fetus for a couple with 4 daughters and no sons. Sex selection is the major use of prenatal diagnosis in India. The majority in the U.S.A. (62%) and Hungary (60%) would also do sex selection or refer. We discuss possible means of preventing sex selection while avoiding medical paternalism and promoting the autonomy of women.

China's Genetic Services Providers' Attitudes Towards Several Ethical Issues: A Cross-Cultural Survey

Attitudes towards ethical, legal and social issues in genetic research and practice were investigated in 402 genetic services providers from 30 provinces and autonomous regions in China. This was done using a Chinese version of an international survey questionnaire on ethics and genetics that has been circulated in 37 nations. In all, 255 study participants completed questionnaires (63%). The majority of the respondents (89%) reported that they agreed with the current Chinese laws and regulations on termination of pregnancy for genetic abnormalities and non‐medical indications, on the basis of considerations of population control and family planning. More than half the respondents opposed sex selection by prenatal diagnosis in the absence of an X‐linked disorder. However, most of them (86%) would prefer directive counseling. More than half would agree to disclose genetic information to relatives at risk, and would permit third parties such as law enforcement agencies, spouse/partner, blood relatives, employers involving public safety, life and health insurers to access stored DNA without consent. The majority (73%‐98%) also thought that DNA fingerprinting should be required for prisoners convicted of or charged with crimes, members of armed forces and all newborns. Although these are only the first part of the results of our international survey, they provide an initial basis for international discussion on ethics and genetics in China.

HUGO Urges Genetic Benefit-Sharing

In view of the fact that for-profit enterprise exceeds public expenditures on genetic research and that benefits from the Human Genome Project may accrue only to rich people in rich nations, the HUGO Ethics Committee discussed the necessity of benefit-sharing. Discussions involved case examples ranging from single-gene to multifactorial disorders and included the difficulties of defining community, especially when multifactorial diseases are involved. The Committee discussed arguments for benefit-sharing, including common heritage, the genome as a common resource, and three types of justice: compensatory, procedural, and distributive. The Committee also discussed the importance of community participation in defining benefit, agreed that companies involved in health have special obligations beyond paying taxes, and recommended they devote 1–3% of net profits to healthcare infrastructure or humanitarian efforts.

Ethics and genetics: an international survey.

Wertz and Fletcher briefly summarize the findings of their 1985-86 survey of responses to ethical dilemmas by medical geneticists in 19 countries. Geneticists identified six categories of ethical problems encountered in practice: (1) the duty to warn third parties of genetic harm vs. the duty to preserve patient confidentiality; and (2) full disclosure of sensitive information; (3) full disclosure of test results; (4) directive vs. nondirective counseling; (5) patient requests for prenatal diagnosis without medical indication; and (6) mandatory vs. voluntary screening programs and access by third parties to test results. Survey participants ranked issues that they believed would be of greatest ethical concern to their field within the next 10 to 15 years. The authors caution that issues seen as less problematic by medical geneticists may be those of most concern to the public.

Mexican geneticists' opinions on disclosure issues

Here we discuss the opinion on disclosure issues (respect for confidentiality) of Mexican professionals working in clinical genetics. The information was obtained from a comprehensive survey on genetics, ethics and society organized by Wertz and Fletcher in 1993, in which geneticists from 37 nations participated. The responses to 18 questions from 64 of 89 (72%) geneticists invited to participate were analyzed for this paper. The questions were directed to investigate: a) disclosure of clinically relevant information in several situations such as testicular feminization syndrome, mosaic de novo balanced translocation in a fetus, or accidental discovery of non‐paternity; b) the protection of patients privacy from the spouse or blood relatives; and c) confidentiality in cases with high genetic risk to relatives. The results reveal significant disparity between general responses related to disclosure of all clinically relevant information and specific responses in particular cases. In addition, professionals appear to give higher priority to protecting the spouse, blood relatives or public safety, rather than the patients confidentiality.

Moral reasoning among medical geneticists in eighteen nations

We surveyed the approaches of 661 geneticists in 18 nations to 14 clinical cases and asked them to give their ethical reasons for choosing these approaches. Patient autonomy was the dominant value in clinical decision-making, with 59% of responses, followed by non-maleficence (20%), beneficence (11%) and justice (5%). In all, 39% described the consequences of their actions, 26% mentioned conflicts of interest between different parties and 72% placed patient welfare above the welfare of others. The U.S., Canada, Sweden, and U.K. led in responses favoring autonomy. There were substantial international differences in moral reasoning. Gender differences in responses reflected womens greater attention to relationships and supported feminist ethical theories.

The 19-Nation Survey; Genetics and Ethics Around the World

Medical or clinical genetics is “the aspect of human genetics that is concerned with the relation between heredity and disease” [14]. This growing medical specialty is concerned with all aspects of genetic disorders, including research, diagnosis, counseling, and treatment. The scientific basis for medical genetics is developing rapidly. Demonstration that DNA is the genetic material has led to a firm definition of the gene and to new diagnostic tests based on the DNA concept.