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Genomic research with the newly dead: a crossroads for ethics and policy
Rebecca L Walker1, Eric T Juengst, Warren Whipple
1Associate Professor of Social Medicine, Core faculty in the Center for Bioethics, and Adjunct Associate Professor of Philosophy at the University of North Carolina at Chapel Hill.
Abstract:
Recent advances in next generation sequencing along with high hopes for genomic medicine have inspired interest in genomic research with the newly dead. However, applicable law does not adequately determine ethical or policy responses to such research. In this paper we propose that such research stands at a crossroads between other more established biomedical clinical and research practices. In addressing the ethical and policy issues raised by a particular research project within our institution comparatively with these other practices, we illustrate the moral significance of paying careful heed to where one looks for guidance in responding to ethical questions raised by a novel endeavor.
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