Genetic Privacy and Confidentiality: Why They Are So Hard to Protect
7 Pages Posted: 12 Feb 2010 Last revised: 19 Feb 2014
Date Written: September 1, 1998
Genetic privacy and confidentiality have both intrinsic and consequential value. Although general agreement exists about the need to protect privacy and confidentiality in the abstract, most of the concern has focused on preventing the harmful uses of this sensitive information. I hope to demonstrate in this article that the reason why genetic privacy and confidentiality are so difficult to protect is that any effort to protect them inevitably implicates broader and extremely contentious issues, such as the right of access to health care. Moreover, the tentitave legislative and policy steps undertaken and propsosed thus far have been, for the most part, misguided, simplistic, and ineffective.
Keywords: Privacy, confidentiality, genetics, health insurance, life insurance, long-term insurance, employment discrimination, american with disabilities act, ADA
JEL Classification: K31, K32
Suggested Citation: Suggested Citation