Genetics and Insurance: Accessing and Using Private Information

Social Philosophy and Policy 17 (2):235 (2000)
Is information about a person's genome, whether derived from the analysis of DNA or otherwise, protected by the right to privacy? If it is, why and in what manner? It often appears that some people believe that the answer to this question is to be found in molecular genetics itself. They point to the rapid progress being made in basic and applied aspects of this field of biology; this progress has remarkably increased what is known about human genetics. Since knowledge of a particular person's genetic makeup entails a potential intrusion into that person's most private realms and exposes him or her to dire results if revealed to others, they argue, the law needs to protect “genetic privacy.” There is nothing inherently wrong with this account, but it certainly presupposes that we know—and agree about—what it means to protect privacy and, indeed, what interests are implicated in the concept and why they matter. Rather than make this assumption, in this essay I first elaborate a concept of privacy before turning to the potential privacy implications that arise at the intersection of human genetics and the field of insurance. I argue that the core value here is self-determination broadly conceived—that control over one's genetic information may be important for achieving self-determination—but that at least in the context of contracts for life insurance, we should be reluctant to recognize “rights” that would permanently preclude the use of genetic data by insurers
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DOI 10.1017/S0265052500002181
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E. D. Cook (1999). Genetics and the British Insurance Industry. Journal of Medical Ethics 25 (2):157-162.
Neil A. Manson (2007). Why Shouldn't Insurance Companies Know Your Genetic Information? Journal of Philosophical Research 32 (Supplement):345-356.
Matthew P. Butcher (2009). At the Foundations of Information Justice. Ethics and Information Technology 11 (1):57-69.

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