Genetic links, family ties, and social bonds: Rights and responsibilities in the face of genetic knowledge
David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Ezio Di Nucci
Jonathan Jenkins Ichikawa
Jack Alan Reynolds
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Journal of Medicine and Philosophy 23 (1):10 – 30 (1998)
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.
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Gabriel Lázaro-Muñoz, John M. Conley, Arlene M. Davis, Marcia Van Riper, Rebecca L. Walker & Eric T. Juengst (2015). Looking for Trouble: Preventive Genomic Sequencing in the General Population and the Role of Patient Choice. American Journal of Bioethics 15 (7):3-14.
Christian Lenk & Debora Frommeld (2015). Different Concepts and Models of Information for Family-Relevant Genetic Findings: Comparison and Ethical Analysis. Medicine, Health Care and Philosophy 18 (3):393-408.
Jane Wilson (2005). To Know or Not to Know? Genetic Ignorance, Autonomy and Paternalism. Bioethics 19 (5-6):492-504.
M. Sheehan (2011). Can Broad Consent Be Informed Consent? Public Health Ethics 4 (3):226-235.
Benjamin E. Berkman, Sara Chandros Hull & Leslie G. Biesecker (2015). Scrutinizing the Right Not to Know. American Journal of Bioethics 15 (7):17-19.
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