On Getting “Genetic” Out of “Genetic Disease”

Abstract

Most of the attention devoted in recent years to the ethical issues involved in the manipulation of human genes has been focused either on the potential risks involved in acquiring the knowledge needed to manipulate genes effectively, or on the valuational questions associated with the use of positive eugenics to improve the species. In illustration of the former sort of issue, the highly touted Asilomar Conference endorsed limitation of research on transplantation of genes into viruses and bacteria to strains unable to survive outside of highly artificial laboratory environments; the restriction was adopted in light of the potential risk of deadly mutant strains escaping the confines of the laboratory.² Concerns of the latter sort, ignited by futurists such as H. G. Wells and Aldous Huxley, and fueled by the studies of Arthur Jensen and others into the genetic connections between intelligence, race, and socioeconomic status (together with the opposition to and criticism of their work), have prompted reassurances from such distinguished researchers as Bernard Davis, who has argued that our “vast Ignorance” of the generic and environment bases of polygenetic traits “protect us against the main possibilities of harm from gene replacement”³.

An earlier version of this paper appears under the title “Why ‘Genetic Disease’?” in Marc Lappé, Tabitha Powledge, et al., eds., Genetic Counseling: Facts, Values and Norms, New York, Stratton Intercontinental Medical Book Corporation, forthcoming. Material form the version is herein reprinted with the kind permission of the editors and publisher. The research for these papers was sponsored in part by the Institute of Society, Ethics and the Life Sciences, Hastings Center, Hastings-in-Hudson, New York.