Protecting Communities in Research: Current Guidelines and Limits of Extrapolation
Document Type
Response or Comment
Publication Date
11-1999
Source
Nature Genetics
Volume
23
Issue
3
First Page
275
Last Page
280
URL with Digital Object Identifier
http://dx.doi.org/10.1038/15455
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.
Notes
Reprinted in: Emanuel EJ, Crouch RA, Arras JD, Moreno JD, Grady C. (Eds.). Ethical and Regulatory Aspects of Clinical Research: Readings and Commentary. 340-341.
Dr. Charles Weijer is currently a faculty member at The University of Western Ontario.