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Protecting communities in research: current guidelines and limits of extrapolation

Nature Genetics volume 23, pages 275–280 (1999)Cite this article

Abstract

As genetic research increasingly focuses on communities, there have been calls for extending research protections to them. We critically examine guidelines developed to protect aboriginal communities and consider their applicability to other communities. These guidelines are based on a model of researcher-community partnership and span the phases of a research project, from protocol development to publication. The complete list of 23 protections may apply to those few non-aboriginal communities, such as the Amish, that are highly cohesive. Although some protections may be applicable to less-cohesive communities, such as Ashkenazi Jews, analysis suggests substantial problems in extending these guidelines in toto beyond the aboriginal communities for which they were developed.

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Acknowledgements

We thank T. Beauchamp, W. Freedman, J. Kaufert, I. Maddocks, A. Wichman and B. Zinman. This work was supported by the Department of Clinical Bioethics, Warren G. Magneson Clinical Center, National Institutes of Health, a Medical Research Council of Canada Scholar Award and Operating Grant (to C.W.), and a Dalhousie University Clinical Scholar Award (to C.W.). The opinions in this article are the authors' and do not necessarily reflect the views or policies of the Department of Health.

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Authors and Affiliations

  1. Department of Bioethics, Dalhousie University, Halifax, Nova Scotia, Canada

    Charles Weijer

  2. Joint Centre for Bioethics, University of Toronto, Toronto, Ontario, Canada

    Gary Goldsand

  3. Department of Clinical Bioethics, Warren G. Magnusen Clinical Center, National Institutes of Health, Bethesda, Maryland, USA

    Ezekiel J. Emanuel

Authors
  1. Charles Weijer
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  2. Gary Goldsand
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  3. Ezekiel J. Emanuel
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Correspondence to Charles Weijer.

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Weijer, C., Goldsand, G. & Emanuel, E. Protecting communities in research: current guidelines and limits of extrapolation. Nat Genet 23, 275–280 (1999). https://doi.org/10.1038/15455

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