Literature DB >> 18457228

Transforming genetic research practices with marginalized communities: a case for responsive justice.

Sara Goering, Suzanne Holland, Kelly Fryer-Edwards.   

Abstract

Genetics researchers often work with distinct communities. To take moral account of how their research affects these communities, they need a richer conception of justice and they need to make those communities equal participants in decision-making about how the research is conducted and what is produced and published out of it.

Entities:  

Mesh：

Year:  2008        PMID： 18457228     DOI： 10.1353/hcr.2008.0027

Source DB:  PubMed          Journal:  Hastings Cent Rep        ISSN： 0093-0334            Impact factor:   2.683


  14 in total

1.  Genomic Justice for Native Americans: Impact of the Havasupai Case on Genetic Research.

Authors:  Nanibaa' A Garrison
Journal:  Sci Technol Human Values       Date:  2012-12-21

2.  Ethics and Science in the Participatory Era: A Vignette-Based Delphi Study.

Authors:  Elizabeth Bromley; Lisa Mikesell; Dmitry Khodyakov
Journal:  J Empir Res Hum Res Ethics       Date:  2017-07-10       Impact factor: 1.742

3.  Meeting the governance challenges of next-generation biorepository research.

Authors:  Stephanie M Fullerton; Nicholas R Anderson; Greg Guzauskas; Dena Freeman; Kelly Fryer-Edwards
Journal:  Sci Transl Med       Date:  2010-01-20       Impact factor: 17.956

4.  Changing the Conversation about The Ethics of Genomics and Health Disparities Research with American Indian and Alaska Native Communities: A Report from the Field.

Authors:  Sara Chandros Hull
Journal:  J Health Care Poor Underserved       Date:  2019

5.  Relationships hold the key to trustworthy and productive translational science: recommendations for expanding community engagement in biomedical research.

Authors:  Mark Yarborough; Kelly Edwards; Paula Espinoza; Gail Geller; Alok Sarwal; Richard Sharp; Paul Spicer
Journal:  Clin Transl Sci       Date:  2013-01-14       Impact factor: 4.689

6.  Building partnerships in community-based participatory research: budgetary and other cost considerations.

Authors:  Theresa J Hoeft; Wylie Burke; Scarlett E Hopkins; Walkie Charles; Susan B Trinidad; Rosalina D James; Bert B Boyer
Journal:  Health Promot Pract       Date:  2013-04-30

7.  Risk, reward, and the double-edged sword: perspectives on pharmacogenetic research and clinical testing among Alaska Native people.

Authors:  Jennifer L Shaw; Renee Robinson; Helene Starks; Wylie Burke; Denise A Dillard
Journal:  Am J Public Health       Date:  2013-10-17       Impact factor: 9.308

8.  Offering aggregate results to participants in genomic research: opportunities and challenges.

Authors:  Laura M Beskow; Wylie Burke; Stephanie M Fullerton; Richard R Sharp
Journal:  Genet Med       Date:  2012-01-26       Impact factor: 8.822

9.  Obligations of the "Gift": Reciprocity and Responsibility in Precision Medicine.

Authors:  Sandra Soo-Jin Lee
Journal:  Am J Bioeth       Date:  2020-12-16       Impact factor: 11.229

Review 10.  Values in translation: how asking the right questions can move translational science toward greater health impact.

Authors:  Maureen Kelley; Kelly Edwards; Helene Starks; Stephanie M Fullerton; Rosalina James; Sara Goering; Suzanne Holland; Mary L Disis; Wylie Burke
Journal:  Clin Transl Sci       Date:  2012-08-07       Impact factor: 4.689
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