Literature DB >> 9354789

Communal discourse as a supplement to informed consent for genetic research.

M W Foster1, A J Eisenbraun, T H Carter.   

Abstract

Genetic technologies present unique problems for the practice of informed consent. They provide information that may affect a study participant's family or kindred, which may be identifiable as an ethnic or locally isolated population. That information may be used to construct adverse perceptions of such identifiable populations, including non-participants who may not have been informed of or consented to the analyses. To address collective implications of genetic research, we describe a process that can supplement individual consent. Our approach engages pre-existing social units in discourses about proposed research. Communal discourses can influence individuals' decisions to participate in research studies.

Entities:  

Keywords:  Biomedical and Behavioral Research; Genetics and Reproduction

Mesh:

Year:  1997        PMID: 9354789     DOI: 10.1038/ng1197-277

Source DB:  PubMed          Journal:  Nat Genet        ISSN: 1061-4036            Impact factor:   38.330


  8 in total

1.  Caught in Collaboration.

Authors:  Deepa S Reddy
Journal:  Collab Anthropol       Date:  2008

Review 2.  Ethical goals of community consultation in research.

Authors:  Neal Dickert; Jeremy Sugarman
Journal:  Am J Public Health       Date:  2005-06-16       Impact factor: 9.308

Review 3.  Seeking consent for research with indigenous communities: a systematic review.

Authors:  Emily F M Fitzpatrick; Alexandra L C Martiniuk; Heather D'Antoine; June Oscar; Maureen Carter; Elizabeth J Elliott
Journal:  BMC Med Ethics       Date:  2016-10-22       Impact factor: 2.652

4.  Voluntary participation and informed consent to international genetic research.

Authors:  Patricia A Marshall; Clement A Adebamowo; Adebowale A Adeyemo; Temidayo O Ogundiran; Mirjana Vekich; Teri Strenski; Jie Zhou; T Elaine Prewitt; Richard S Cooper; Charles N Rotimi
Journal:  Am J Public Health       Date:  2006-10-03       Impact factor: 9.308

5.  Confronting real time ethical, legal, and social issues in the Electronic Medical Records and Genomics (eMERGE) Consortium.

Authors:  Ellen Wright Clayton; Maureen Smith; Stephanie M Fullerton; Wylie Burke; Catherine A McCarty; Barbara A Koenig; Amy L McGuire; Laura M Beskow; Lynn Dressler; Amy A Lemke; Erin M Ramos; Laura Lyman Rodriguez
Journal:  Genet Med       Date:  2010-10       Impact factor: 8.822

6.  Experiences with community engagement and informed consent in a genetic cohort study of severe childhood diseases in Kenya.

Authors:  Vicki M Marsh; Dorcas M Kamuya; Albert M Mlamba; Thomas N Williams; Sassy S Molyneux
Journal:  BMC Med Ethics       Date:  2010-07-15       Impact factor: 2.652

7.  Community involvement in the ethical review of genetic research: lessons from American Indian and Alaska Native populations.

Authors:  Richard R Sharp; Morris W Foster
Journal:  Environ Health Perspect       Date:  2002-04       Impact factor: 9.031

8.  Beginning community engagement at a busy biomedical research programme: experiences from the KEMRI CGMRC-Wellcome Trust Research Programme, Kilifi, Kenya.

Authors:  Vicki Marsh; Dorcas Kamuya; Yvonne Rowa; Caroline Gikonyo; Sassy Molyneux
Journal:  Soc Sci Med       Date:  2008-04-02       Impact factor: 4.634

  8 in total

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