Biobanking and Public Health: Is a Human Rights Approach the Tie That Binds?
Meslin, Eric M
Human genetics 2011 Sep; 130(3): 451-63
Ethical principles guiding public health and genomic medicine are often at odds: whereas public health practice adopts collectivist principles that emphasize population-based benefits, recent advances in genomic and personalized medicine are grounded in an individualist ethic that privileges informed consent, and the balancing of individual risk and benefit. Indeed, the attraction of personalized medicine is the promise it holds out to help individuals get the "right medicine for the right problem at the right time." Research biobanks are an effective tool in the genomic medicine toolbox. Biobanking in public health presents a unique case study to unpack some of these issues in more detail. For example, there is a long history of using banked tissue obtained under clinical diagnostic conditions for later public health uses. But despite the collectivist approach of public health, the principles applied to the ethical challenges of biobanking (e.g. informed consent, autonomy, privacy) remain individualist. We demonstrate the value of using human rights as a public health ethics framework to address this tension in biobanking by applying it to two illustrative cases.
Autonomy; Biobanks; Consent; Ethics; Health; Human Rights; Informed Consent; Medicine; Personalized Medicine; Privacy; Public Health; Research; Rights; Risk; Health Care; Genetics, Molecular Biology and Microbiology; International and Political Dimensions of Biology and Medicine; Information Science Ethics;
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