Protecting communities in research: current guidelines and limits of extrapolation.

by: C Weijer, G Goldsand, EJ Emanuel

Nat Genet, Vol. 23, No. 3. (November 1999), pp. 275-280.

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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.

@article{citeulike:164814, 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.}, address = {Department of Bioethics, Dalhousie University, Halifax, Nova Scotia, Canada. Charles.Weijer@dal.ca}, author = {Weijer, C. and Goldsand, G. and Emanuel, E. J. }, citeulike-article-id = {164814}, doi = {10.1038/15455}, issn = {1061-4036}, journal = {Nat Genet}, keywords = {community-studies, recontact}, month = {November}, number = {3}, pages = {275--280}, posted-at = {2005-06-23 18:03:23}, priority = {2}, title = {Protecting communities in research: current guidelines and limits of extrapolation.}, url = {http://dx.doi.org/10.1038/15455}, volume = {23}, year = {1999} }

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TY - JOUR ID - citeulike:164814 L3 - citeulike-article-id:164814 TI - Protecting communities in research: current guidelines and limits of extrapolation. JF - Nat Genet VL - 23 IS - 3 SP - 275 EP - 280 AD - Department of Bioethics, Dalhousie University, Halifax, Nova Scotia, Canada. Charles.Weijer@dal.ca SN - 1061-4036 N2 - 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. KW - community-studies KW - recontact AU - Weijer, C AU - Goldsand, G AU - Emanuel, EJ PY - 1999/11// UR - http://dx.doi.org/10.1038/15455 ER -

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