In this paper we question whether the concept of "genetic privacy" is a contradiction in terms. And, if so, whether the implications of such a conclusion, inevitably impact on how society comes to perceive privacy and responsibility generally. Current law and ethical discourse place a high value on self-determination and the rights of individuals. In the medical sphere, the recognition of patient "rights" has resulted in health professionals being given clear duties of candour and frankness. Dilemmas arise, however, when patients (...) decline to know relevant information or, knowing it, refuse to share it with others who may also need to know. This paper considers the notions of interconnectedness and responsibility to others which are brought to the fore in the genetic sphere and which challenge the primacy afforded to personal autonomy. It also explores the extent to which an individual's perceived moral obligations can or should be enforced. (shrink)

Currently, some of the most significant moral issues involving genetic links relate to genetic knowledge. In this paper, instead of looking at the frequently addressed issues of responsibilities professionals or institutions have to individuals, I take up the question of what responsibilities individuals have to one another with respect to genetic knowledge. I address the questions of whether individuals have a moral right to pursue their own goals without contributing to society's knowledge of population genetics, without adding to their family's (...) knowledge of its genetic history, and without discovering genetic information about themselves and their offspring. These questions lead to an examination of the presumed right to genetic ignorance and an exploration of a variety of social bonds. Analyzing cases in light of these considerations leads to a surprising conclusion about a widely accepted precept of genetic counseling, to some ethical insights into typical problems, and to some further unanswered questions about personal responsibility in the face of genetic knowledge. (shrink)

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 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. (shrink)

As our knowledge of the genetic constitution of human beings expands, testing to determine an individual's disposition toward a given disease will also increase. Since genes are a family affair, to know that an individual is genetically disposed toward a specific disease is an indicator that members of this individual's family may also be so disposed.