Genetic health and eugenics precedents: a voice of caution.

Abstract

The growing tendency to provide genetic explanations for disease means our contemporary concept of biological health includes not only the concept of absence of disease processes, but also the idea of an individual's risk of disease or death. A genetic definition of health incorporates the concept of the absence of the risk of illness processes in those to whom we are genetically related. The concept of genetic disease thus always involves a social unit: the family, a couple contemplating having children, or an ethnic or geographically defined group. The ethical and legal risks inherent when using concepts of genetic disease or genetic health in social decision making are captured by the term "eugenics," the idea that certain individuals are genetically too risky for society to tolerate. Our culture has a long history of eugenic practices and genocides, unrecognized by cultural, social, and legal institutions as such until long after the practices had taken place. The Nazi experiments on concentration camp inmates and the Tuskegee Study of Untreated Syphilis in the Negro Male have been cited in the bioethics literature as eugenic precedents modern legal institutions should avoid. In a recent public health research case involving lead abatement in a poor and mostly minority neighborhoods, Grimes v. Kennedy Krieger Institute, the court made reference to both the Nazi experiments and Tuskegee in holding that a biomedical research institution could potentially be liable for a flawed consent process. While agreeing with the court's result, this article proposes that neither Tuskegee nor the Nazi cases provide a theory of liability when socially defined groups are questioning either disease management or research. Courts must deal with the reality of genetic health being defined in social terms such as "race," despite current disclaimers from scientists that race has no genetic significance. Courts should use liability doctrines to optimize the risks and benefits of growth in genetic knowledge from the perspective of public health rather than the individualized perspectives of medicine.