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  1. Community engagement in biobanking: Experiences from eMERGE Network.Amy A. Lemke, Joel T. Wu, Carol Waudby, Jill Pulley, Carol P. Somkin & Susan Brown Trinidad - 2010 - Genomics, Society and Policy 6 (3):1-18.
    Advances in genomic technologies and the promise of "personalised medicine" have spurred the interest of researchers, healthcare systems, and the general public. However, the success of population-based genetic studies depends on the willingness of large numbers of individuals and diverse communities to grant researchers access to detailed medical and genetic information. Certain features of this kind of research - such as the establishment of biobanks and prospective data collection from participants' electronic medical records - make the potential risks and benefits (...)
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  • Returning incidental findings from genetic research to children: views of parents of children affected by rare diseases.Erika Kleiderman, Bartha Maria Knoppers, Conrad V. Fernandez, Kym M. Boycott, Gail Ouellette, Durhane Wong-Rieger, Shelin Adam, Julie Richer & Denise Avard - 2014 - Journal of Medical Ethics 40 (10):691-696.
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