Privacy issues in second stage genomics

Abstract

Research that identifies genes useful in the prevention and treatment of disease will require access to biologic samples and medical records protected by traditional notions of privacy and confidentiality. Resolving conflicts between privacy and genomic research will require articulating the ethical rules that should govern such practices and then implementing those rules in the national, regional, or local health systems in which the data of interest exists. As consensus develops about the ethical rules that should govern such research, attention will shift to the practical and political problems of installing and implementing those rules in the agencies and institutions where such research will occur.