Informed consent and genetic information

In the last 25 years writing in bioethics, particularly in medical ethics, has generally claimed that action is ethically acceptable only if it receives informed consent from those affected. However, informed consent provides only limited justification, and may provide even less as new information technologies are used to store and handle personal data, including personal genetic data. The central philosophical weakness of relying on informed consent procedures for ethical justification is that consent is a propositional attitude, so referentially opaque: consent is given to specific propositions describing limited aspects of a situation, and does not transfer even to closely related propositions. Assembling genetic data in databases creates additional difficulties for ethical justification. This is not because genetic information is intrinsically exceptional, but because the merger of genetic and information technologies make it possible to assemble massive quantities of complex information that defeat individuals' best efforts to grasp what is at stake, or to give or withhold informed consent. The future agenda for bioethics will need to take account of both these limitations of appeals to informed consent.
Keywords No keywords specified (fix it)
Categories (categorize this paper)
DOI 10.1016/S1369-8486(01)00026-7
 Save to my reading list
Follow the author(s)
Edit this record
My bibliography
Export citation
Find it on Scholar
Mark as duplicate
Request removal from index
Revision history
Download options
Our Archive

Upload a copy of this paper     Check publisher's policy     Papers currently archived: 30,719
External links

Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
Through your library
References found in this work BETA
Reference and Modality.W. V. Quine - 1953 - In Willard Orman Quinvane (ed.), Journal of Symbolic Logic. Harvard University Press. pp. 137-138.
Anthropocentrism: A Misunderstood Problem.Tim Hayward - 1997 - Environmental Values 6 (1):49 - 63.

Add more references

Citations of this work BETA
Personal Autonomy and Informed Consent.Lars Øystein Ursin - 2009 - Medicine, Health Care and Philosophy 12 (1):17-24.
Changing Ethical Frameworks: From Individual Rights to the Common Good?Margit Sutrop - 2011 - Cambridge Quarterly of Healthcare Ethics 20 (4):533-545.
Database Research: Public and Private Interests.Vilhjálmur Árnason - 2011 - Cambridge Quarterly of Healthcare Ethics 20 (4):563-571.
Pharmacogenetics: The Bioethical Problem of DNA Investment Banking.Oonagh P. Corrigan & Bryn Williams-Jones - 2006 - Studies in History and Philosophy of Science Part C 37 (3):550-565.

View all 7 citations / Add more citations

Similar books and articles
Added to PP index

Total downloads
44 ( #122,275 of 2,197,295 )

Recent downloads (6 months)
4 ( #61,501 of 2,197,295 )

How can I increase my downloads?

Monthly downloads
My notes
Sign in to use this feature