Genetic links, family ties, and social bonds: rights and responsibilities in the face of genetic knowledge

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 informa-tion 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 prob-lems, and to some further unanswered questions about personal responsibility in the face of genetic knowledge. Key words: genetic counseling, genetic testing, genetic screening, right not to know, family responsibilities. I