Genetic determinism and the overprotection of human subjects

• Published in: Nature genetics Vol. 21; no. 4; p. 362
• Main Authors: Wilcox, Allen J., Taylor, Jack A., Sharp, Richard R., London, Stephanie J.
• Format: Journal Article
• Language: English
• Published: New York Nature Publishing Group US 01.04.1999
• Subjects: Agriculture; Alleles; Animal Genetics and Genomics; Biomedical and Life Sciences; Biomedicine; Cancer Research; Child; Clinical Protocols - standards; correspondence; Disclosure; Ethics, Medical; Federal Government; Gene Function; Genetic Determinism; Genetic Predisposition to Disease - genetics; Genetic Research; Genetics, Behavioral; Genetics, Medical - standards; Guidelines as Topic; Human Experimentation; Human Genetics; Humans; Informed Consent; Minors; National Institutes of Health (U.S.); Policy Making; Research Design; Research Subjects; United States; United States; Genetics and Reproduction; National Institutes of Health; Biomedical and Behavioral Research
• ISSN: 1061-4036; 1546-1718
• DOI: 10.1038/7692

Advances in genetic research have raised questions about the protection of human subjects. The usual concern is whether existing protections are sufficient, but an escalation of protections can also create problems, as illustrated in the following example. Epidemiologists were planning a study of learning problems in healthy children. One hypothesis was that ordinary genetic variations in metabolism might make some children more vulnerable to neurotoxic effects of household pesticides. Investigators planned to collect cheek swabs from children to determine genetic metabolic variants. An ethicist was asked to help with the consent form. The ethicist recommended advising the parents of these children as follows: "Genetic information about [your child] could alter the way in which you think about them...Some individuals may feel anxious, depressed or additionally stressed by learning genetic information about their children...Your child could experience problems in school as a result of participation in genetic research..." These warnings are directly based on NIH guidelines for human genetic research. Although these guidelines do not carry the force of law or regulation, they are highly influential in the deliberations of Institutional Review Boards (IRBs). The current guidelines reflect an assumption of genetic determinism in which all alleles are expected to have direct and powerful consequences on health. In contrast, the common varieties of metabolism genes in the example above are neither necessary nor sufficient to produce disease.