Protecting communities in research: current guidelines and limits of extrapolation

As genetic research increasingly focuses on communities, there have been ca lls for extending research protections to them. We critically examine guide lines developed to protect aboriginal communities and consider their applic ability to other communities. These guidelines are based on a model of rese archer-community partnership and span the phases of a research project, fro m 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-co hesive communities, such as Ashkenazi Jews, analysis suggests substantial p roblems in extending these guidelines in tote beyond the aboriginal communi ties for which they were developed.