Genetic knowledge and third-party interests.

Abstract

Recent discussions of genetic information have highlighted the need for ethical disclosure guidelines. For instance, the (Canadian) Royal Commission on New Reproductive Technologies points out the range of third-party interests in genetic information and the lack of clear ethical and professional guidelines governing its dissemination. Among the more worrying interests are those of insurance companies and prospective employers. However, also worrisome is the problem of negotiating the first-party interest in privacy (from which the professional obligation of confidentiality arises) and strong third-party claims from family members. The survey by Knoppers and Laberge of consent forms currently used in DNA testing in Canada shows that fewer than half mention access by family members, and only three out of 20 alert subjects to the possibility of finding nonpaternity. Both the Royal Commission and the Knoppers research group recommend integrated, national consent standards, with the Knoppers group explicitly approving a “reasonable person” standard of disclosure. While endorsing the call for integrated consent guidelines, in this paper I intend to raise some doubts about the adequacy of the reasonable person standard in light of gender differences in reproductive burden and risk perception.