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  1. Involving Study Populations in the Review of Genetic Research.Richard R. Sharp & Morris W. Foster - 2000 - Journal of Law, Medicine and Ethics 28 (1):41-51.
    Research on human genetic variation can present collective risks to all members of a socially identifiable group. Research that associates race or ethnicity with a genetic disposition to disease, for example, presents risks of group discrimination and stigmatization. To better protect against these risks, some have proposed supplemental community-based reviews of research on genetic differences between populations. The assumption behind these appeals is that involving members of study populations in the review process can help to identify and minimize collective risks (...)
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  • An empirical survey on biobanking of human genetic material and data in six EU countries.Isabelle Hirtzlin, Christine Dubreuil, Nathalie Préaubert, Jenny Duchier, Brigitte Jansen, Jürgen Simon, Paula Lobatao De Faria, Anna Perez-Lezaun, Bert Visser, Garrath D. Williams, Anne Cambon-Thomsen & The Eurogenbank Consortium - 2003 - European Journal of Human Genetics 11:475–488.
    Biobanks correspond to different situations: research and technological development, medical diagnosis or therapeutic activities. Their status is not clearly defined. We aimed to investigate human biobanking in Europe, particularly in relation to organisational, economic and ethical issues in various national contexts. Data from a survey in six EU countries were collected as part of a European Research Project examining human and non-human biobanking. A total of 147 institutions concerned with biobanking of human samples and data were investigated by questionnaires and (...)
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