Literature DB >> 18257802

Protecting groups from genetic research.

Daniel Hausman1.   

Abstract

Genetics research, like research in sociology and anthropology, creates risks for groups from which research subjects are drawn. This paper considers what sort of protection for groups from the risks of genetics research should be provided and by whom. The paper categorizes harms by distinguishing process-related from outcome-related harms and by distinguishing two kinds of group harms. It argues that calls for community engagement are justified with respect to some kinds of harms, but not with respect to others; and it cautions that community engagement may itself be harmful.

Mesh:

Year:  2008        PMID: 18257802     DOI: 10.1111/j.1467-8519.2007.00625.x

Source DB:  PubMed          Journal:  Bioethics        ISSN: 0269-9702            Impact factor:   1.898


  9 in total

1.  Secondary uses and the governance of de-identified data: lessons from the human genome diversity panel.

Authors:  Stephanie M Fullerton; Sandra S-J Lee
Journal:  BMC Med Ethics       Date:  2011-09-26       Impact factor: 2.652

2.  Are changes to the common rule necessary to address evolving areas of research? A case study focusing on the human microbiome project.

Authors:  Diane E Hoffmann; J Dennis Fortenberry; Jacques Ravel
Journal:  J Law Med Ethics       Date:  2013       Impact factor: 1.718

3.  Community engagement about genetic variation research.

Authors:  Sharon F Terry; Kurt D Christensen; Susan Metosky; Gayle Rudofsky; Kathleen P Deignan; Hulda Martinez; Penelope Johnson-Moore; Toby Citrin
Journal:  Popul Health Manag       Date:  2011-08-04       Impact factor: 2.459

4.  Human subjects protections in community-engaged research: a research ethics framework.

Authors:  Lainie Friedman Ross; Allan Loup; Robert M Nelson; Jeffrey R Botkin; Rhonda Kost; George R Smith; Sarah Gehlert
Journal:  J Empir Res Hum Res Ethics       Date:  2010-03       Impact factor: 1.742

5.  Patient perspectives on group benefits and harms in genetic research.

Authors:  A J Goldenberg; S C Hull; B S Wilfond; R R Sharp
Journal:  Public Health Genomics       Date:  2010-10-08       Impact factor: 2.000

Review 6.  Social and scientific motivations to move beyond groups in allele frequencies: The TOPMed experience.

Authors:  Sarah C Nelson; Stephanie M Gogarten; Stephanie M Fullerton; Carmen R Isasi; Braxton D Mitchell; Kari E North; Stephen S Rich; Matthew R G Taylor; Sebastian Zöllner; Tamar Sofer
Journal:  Am J Hum Genet       Date:  2022-09-01       Impact factor: 11.043

7.  Informed decision making about predictive DNA tests: arguments for more public visibility of personal deliberations about the good life.

Authors:  Marianne Boenink; Simone van der Burg
Journal:  Med Health Care Philos       Date:  2010-05

8.  Genetic research and aboriginal and Torres Strait Islander Australians.

Authors:  Emma Kowal; Glenn Pearson; Lobna Rouhani; Chris S Peacock; Sarra E Jamieson; Jenefer M Blackwell
Journal:  J Bioeth Inq       Date:  2012-10-12       Impact factor: 1.352

9.  Ethical challenges in global health-related stigma research.

Authors:  Joseph Millum; Megan Campbell; Florencia Luna; Arianne Malekzadeh; Quarraisha Abdool Karim
Journal:  BMC Med       Date:  2019-04-29       Impact factor: 8.775

  9 in total

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