Privacy and policy for genetic research
Ethics and Information Technology 6 (1):5-14 (2004)
| Abstract | I begin with a discussion of the value of privacy and what we lose without it. I then turn to the difficulties of preserving privacy for genetic information and other medical records in the face of advanced information technology. I suggest three alternative public policy approaches to the problem of protecting individual privacy and also preserving databases for genetic research:(1) governmental guidelines and centralized databases, (2) corporate self-regulation, and (3) my hybrid approach. None of these are unproblematic; I discuss strengths and drawbacks of each, emphasizing the importance of protecting the privacy of sensitive medical and genetic information as well as letting information technology flourish to aid patient care, public health and scientific research. | |||||||||
| Keywords | No keywords specified (fix it) | |||||||||
| Categories | ||||||||||
| Options |
|
|||||||||
Download options| PhilPapers Archive |
Upload a copy of this paper Check publisher's policy on self-archival Papers currently archived: 5,701 |
| External links |
 |
| Through your library | Configure |
Similar books and articlesHelen Nissenbaum (1997). Toward an Approach to Privacy in Public: Challenges of Information Technology. Ethics and Behavior 7 (3):207 – 219.
Luciano Floridi (2006). Four Challenges for a Theory of Informational Privacy. Ethics and Information Technology 8 (3).
David L. Wiesenthal & Neil I. Wiener (1996). Privacy and the Human Genome Project. Ethics and Behavior 6 (3):189 – 202.
Lawrence O. Gostin (2001). Health Information: Reconciling Personal Privacy with the Public Good of Human Health. Health Care Analysis 9 (3):321-335.
Soraj Hongladarom (2009). Privacy, the Individual and Genetic Information: A Buddhist Perspective. Bioethics 23 (7):403-412.
Lars Øystein Ursin (2008). Biobank Research and the Right to Privacy. Theoretical Medicine and Bioethics 29 (4):267-285.
G. T. Laurie (2002). Genetic Privacy: A Challenge to Medico-Legal Norms. Cambridge University Press.
Judith Wagner DeCew (1999). Alternatives for Protecting Privacy While Respecting Patient Care and Public Health Needs. Ethics and Information Technology 1 (4):249-255.
Analytics
Monthly downloads |
Added to index2009-01-28Total downloads21 ( #58,767 of 549,119 )Recent downloads (6 months)2 ( #37,390 of 549,119 )How can I increase my downloads? |
My notes
Discussion
