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Protecting communities in pharmacogenetic and pharmacogenomic research

ABSTRACT

The existing EELS literature has usefully identified the scope of ethical issues posed by pharmacogenetic and pharmacogenomic research. The time has come for in-depth examination of particular ethical issues. The involvement of racial and ethnic communities in pharmacogenetic and pharmacogenomic research is contentious precisely because it touches upon the science and politics of studying racial and ethnic difference. To date, the ethics literature has not seriously taken account of the fact that such research impinges upon the interests of communities, and that taking such interests seriously requires that we both protect and empower communities in research. We propose a framework that rests upon the recognition that communities are heterogeneous human associations and differing policies are appropriate for differing communities. Community consent and consultation and community consultation alone are neither appropriate nor required for all pharmacogenetic and pharmacogenomic research. Rather, application of these policy protections must take into account particulars of both planned research and the communities involved.

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Correspondence to C Weijer.

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DUALITY OF INTEREST

Charles Weijer is Associate Professor in the Departments of Bioethics and Surgery at Dalhousie University. A Canadian Institutes of Health Research Investigator Award and Operating Grant support his work in research ethics. He is a Fellow of the Hastings Center and a Fellow of the Royal College of Physicians and Surgeons of Canada.

Paul B Miller is a student in law and philosophy at the University of Toronto, a Junior Fellow of Massey College in Toronto, and a research assistant at the University of Toronto and Dalhousie University. He is supported by a doctoral fellowship from the Social Sciences and Humanities Research Council of Canada.

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Weijer, C., Miller, P. Protecting communities in pharmacogenetic and pharmacogenomic research. Pharmacogenomics J 4, 9–16 (2004). https://doi.org/10.1038/sj.tpj.6500219

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