Informed Consent and Genetic Information |
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Authors: | Onora O'Neill |
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Affiliation: | 1. Institute of Biophysics and Biomedical Engineering, Bulgarian Academy of Sciences, Bulgaria;2. SCHILLER AG, Research and Signal Processing, Baar, Switzerland;3. University Hospital of Basel, Cardiovascular Research Institute (CRIB), Basel, Switzerland;1. U.S. Geological Survey, MS964 Denver Federal Center, Denver, CO 80225, USA;2. U.S. Geological Survey, MS973 Denver Federal Center, Denver, CO 80225, USA;3. U.S. Geological Survey, MS964D Denver Federal Center, Denver, CO 80225, USA;4. U.S. Geological Survey, 3450 Princeton Pike, Lawrenceville, NJ 08648, USA;5. U.S. Geological Survey, 2045 Route 112, Coram, NY 11727, USA |
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Abstract: | 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. |
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Keywords: | Accountability Data Protection Genetic Data Genetic Databases Genetic Information Genetic Tests Information Technology Informed Consent Propositional Attitudes Referential Opacity Trustworthy Institutions |
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