Property rights in genetic information


Abstract
The primary theme of this paper is the normative case against ownership of one's genetic information along with the source of that information (usually human tissues samples). The argument presented here against such “upstream” property rights is based primarily on utilitarian grounds. This issue has new salience thanks to the Human Genome Project and “bio-prospecting” initiatives based on the aggregation of genetic information, such as the one being managed by deCODE Genetics in Iceland. The rationale for ownership is twofold: ownership will protect the basic human rights of privacy and autonomy and it will enable the data subjects to share in the tangible benefits of the genetic research. Proponents of this viewpoint often cite the principle of genetic exceptionalism, which asserts that genetic information needs a higher level of protection than other kinds of personal information such as financial data. We argue, however, that the recognition of such ownership rights would lead to inefficiency along with the disutility of genetic discoveries. Biomedical research will be hampered if property rights in genes and genetic material are too extensive. We contend that other mechanisms such as informed consent and strict confidentiality rules can accomplish the same result as a property right without the liabilities of an exclusive entitlement
Keywords DNA   Human Genome Project   anti-commons   autonomy   bio-prospecting   deCODE   genetic exceptionalism   genetic information   patent   privacy   property rights   utilitarianism
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DOI 10.1023/B:ETIN.0000036157.14807.b0
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Towards a Theory of Privacy in the Information Age.James H. Moor - 1997 - Acm Sigcas Computers and Society 27 (3):27-32.
Just Consequentialism and Computing.James H. Moor - 1999 - Ethics and Information Technology 1 (1):61-65.

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Monumental Questions.Daniel Sportiello - 2018 - Northern Plains Ethics Journal 6 (1):1–17.
CQ Sources/Bibliography.Bette Anton - 1999 - Cambridge Quarterly of Healthcare Ethics 8 (4):348-350.
CQ Sources/Bibliography.Bette Anton - 2008 - Cambridge Quarterly of Healthcare Ethics 17 (4):465-467.
CQ Sources/Bibliography.Bette Anton - 2008 - Cambridge Quarterly of Healthcare Ethics 17 (2).

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