Graduate studies at Western
Ethics and Information Technology 6 (1):29-42 (2004)
|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|
|Categories||categorize this paper)|
|Through your library||Configure|
Similar books and articles
Margaret Otlowski (2007). Donor Perspectives on Issues Associated with Donation of Genetic Samples and Information: An Australian Viewpoint. [REVIEW] Journal of Bioethical Inquiry 4 (2):135-150.
David L. Wiesenthal & Neil I. Wiener (1996). Privacy and the Human Genome Project. Ethics and Behavior 6 (3):189 – 202.
Ludvig Beckman (2004). Are Genetic Self-Tests Dangerous? Assessing the Commercialization of Genetic Testing in Terms of Personal Autonomy. Theoretical Medicine and Bioethics 25 (5-6):387-398.
G. T. Laurie (2002). Genetic Privacy: A Challenge to Medico-Legal Norms. Cambridge University Press.
Ruth Hannah Wilkinson (2010). Genetic Information: Important but Not “Exceptional”. [REVIEW] Identity in the Information Society 3 (3):457-472.
Neil C. Manson (2006). What is Genetic Information, and Why is It Significant? A Contextual, Contrastive, Approach. Journal of Applied Philosophy 23 (1):1–16.
Ainsley Newson (2004). The Nature and Significance of Behavioural Genetic Information. Theoretical Medicine and Bioethics 25 (2):89-111.
Sarah Chan & Muireann Quigley (2007). Frozen Embryos, Genetic Information and Reproductive Rights. Bioethics 21 (8):439–448.
Added to index2009-01-28
Total downloads24 ( #57,851 of 723,496 )
Recent downloads (6 months)1 ( #61,087 of 723,496 )
How can I increase my downloads?