Affiliation:
1. Rivier College
2. Ionian University (Greece)
Abstract
Organized into three main parts, this paper examines some challenges for the informed-consent process in medical research where DNA databanks are employed. In Part 1, we briefly describe the principle of informed consent and show why it is ethically important. Part 2 focuses on some specific challenges that that arise for the traditional informed-consent process in population-wide genetics/genomics research, especially where data-mining techniques are used. In the third and final section, we defend a model of consent based on the notion of a "charitable trust," which we believe can help to preserve the integrity of the consent process in the context of medical and genetic research involving DNA databanks.
Publisher
Association for Computing Machinery (ACM)
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