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The role of community review in evaluating the risks of human genetic variation research.

Abstract：

:The practicality and moral value of community review of human genetic research has become a focus of debate. Examples from two Native American communities are used to address four aspects of that debate: (1) the value of community review in larger, geographically dispersed populations; (2) the identification of culturally specific risks; (3) the potential conflict between individual and group assessments of research-related risks; and (4) the confusion of social categories with biological categories. Our experiences working with these two communities suggest that: (1) successful community review may require the involvement of private social units (e.g., families); (2) culturally specific implications of genetic research may be identifiable only by community members and are of valid concern in their moral universes; (3) community concerns can be incorporated into existing review mechanisms without necessarily giving communities the power to veto research proposals; and (4) the conflation of social and biological categories presents recruitment problems for genetic studies. These conclusions argue for the use of community review to identify and minimize research-related risks posed by genetic studies. Community review also can assist in facilitating participant recruitment and retention, as well as in developing partnerships between researchers and communities.

journal_name

Am J Hum Genet

journal_title

American journal of human genetics

authors

Foster MW,Sharp RR,Freeman WL,Chino M,Bernsten D,Carter TH

doi

10.1086/302415

subject

Has Abstract

pub_date

1999-06-01 00:00:00

pages

1719-27

issue

6

eissn

0002-9297

issn

1537-6605

pii

S0002-9297(07)63675-1

journal_volume

64

pub_type

杂志文章

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