Literature DB >> 20235866

Attitudes toward genetic research review: results from a national survey of professionals involved in human subjects protection.

Amy A Lemke1, Susan B Trinidad, Karen L Edwards, Helene Starks, Georgia L Wiesner.   

Abstract

The recent expansion of human genetics research has raised complex ethical and regulatory issues. However, few published reports describe the views of professionals involved in human subjects protection (HSP) regarding the risks and benefits of genetic research. This anonymous, web-based study elicited the opinions of 208 HSP professionals about review of genetic research. The majority of respondents felt that different guidance is needed for various aspects of genetic protocol review compared with other types of human subjects research. Importantly, opinions were divided on specific genetic research issues, such as what constitutes human subjects research, when to re-consent, and the likelihood and risks of research participant identification. Findings from this study illustrate the need for a collaborative approach to ethics oversight in the review and conduct of genetic research.

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Year:  2010        PMID: 20235866      PMCID: PMC2902178          DOI: 10.1525/jer.2010.5.1.83

Source DB:  PubMed          Journal:  J Empir Res Hum Res Ethics        ISSN: 1556-2646            Impact factor:   1.742


  17 in total

1.  Reforming informed consent to genetic research.

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Journal:  JAMA       Date:  2001-11-14       Impact factor: 56.272

2.  Informed consent for research on stored blood and tissue samples: a survey of institutional review board practices.

Authors:  Mary Terrell White; Jennifer Gamm
Journal:  Account Res       Date:  2002 Jan-Mar       Impact factor: 2.622

3.  The road to research is paved with restrictions.

Authors:  Laura Bonetta; Alan Dove; Myrna Watanabe
Journal:  Nat Med       Date:  2003-06       Impact factor: 53.440

4.  Is multicenter collaborative research in clinical genetics dead and, if so, what killed it?

Authors:  Alasdair G W Hunter
Journal:  Am J Med Genet A       Date:  2005-04-30       Impact factor: 2.802

Review 5.  A review finds that multicenter studies face substantial challenges but strategies exist to achieve Institutional Review Board approval.

Authors:  Sarah M Greene; Ann M Geiger
Journal:  J Clin Epidemiol       Date:  2006-03-15       Impact factor: 6.437

6.  The dysregulation of human subjects research.

Authors:  Norman Fost; Robert J Levine
Journal:  JAMA       Date:  2007-11-14       Impact factor: 56.272

7.  Coddling human guinea pigs.

Authors:  Sharon Begley
Journal:  Newsweek       Date:  2008 Aug 18-25

8.  Impact of IRB requirements on a multicenter survey of prophylactic mastectomy outcomes.

Authors:  Sarah M Greene; Ann M Geiger; Emily L Harris; Andrea Altschuler; Larissa Nekhlyudov; Mary B Barton; Sharon J Rolnick; Joann G Elmore; Suzanne Fletcher
Journal:  Ann Epidemiol       Date:  2005-07-06       Impact factor: 3.797

9.  Problematic variation in local institutional review of a multicenter genetic epidemiology study.

Authors:  Rita McWilliams; Julie Hoover-Fong; Ada Hamosh; Suzanne Beck; Terri Beaty; Garry Cutting
Journal:  JAMA       Date:  2003-07-16       Impact factor: 56.272

Review 10.  Ethical, legal, and social issues related to genomics and cancer research: the impending crisis.

Authors:  Bruce E Ellerin; Robert J Schneider; Arnold Stern; Paolo G Toniolo; Silvia C Formenti
Journal:  J Am Coll Radiol       Date:  2005-11       Impact factor: 5.532

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  25 in total

1.  Researcher and institutional review board chair perspectives on incidental findings in genomic research.

Authors:  Janet K Williams; Sandra Daack-Hirsch; Martha Driessnack; Nancy Downing; Laura Shinkunas; Debra Brandt; Christian Simon
Journal:  Genet Test Mol Biomarkers       Date:  2012-02-21

2.  Genetics and ethics: a possible and necessary dialogue.

Authors:  José Roberto Goldim
Journal:  J Community Genet       Date:  2015-06-03

3.  Broad data sharing in genetic research: views of institutional review board professionals.

Authors:  Amy A Lemke; Maureen E Smith; Wendy A Wolf; Susan Brown Trinidad
Journal:  IRB       Date:  2011 May-Jun

4.  A closer look at the recommended criteria for disclosing genetic results: perspectives of medical genetic specialists, genomic researchers, and institutional review board chairs.

Authors:  Debra S Brandt; Laura Shinkunas; Stephen L Hillis; Sandra E Daack-Hirsch; Martha Driessnack; Nancy R Downing; Megan F Liu; Lisa L Shah; Janet K Williams; Christian M Simon
Journal:  J Genet Couns       Date:  2013-04-02       Impact factor: 2.537

5.  Attitudes toward genetic research review: results from a survey of human genetics researchers.

Authors:  K L Edwards; A A Lemke; S B Trinidad; S M Lewis; H Starks; M T Quinn Griffin; G L Wiesner
Journal:  Public Health Genomics       Date:  2011-04-11       Impact factor: 2.000

6.  Biobank participation and returning research results: perspectives from a deliberative engagement in South Side Chicago.

Authors:  Amy A Lemke; Colin Halverson; Lainie Friedman Ross
Journal:  Am J Med Genet A       Date:  2012-03-21       Impact factor: 2.802

7.  Perspectives of clinical genetics professionals toward genome sequencing and incidental findings: a survey study.

Authors:  A A Lemke; D Bick; D Dimmock; P Simpson; R Veith
Journal:  Clin Genet       Date:  2012-12-07       Impact factor: 4.438

8.  Perspectives of psychiatric investigators and IRB chairs regarding benefits of psychiatric genetics research.

Authors:  Laura Weiss Roberts; Laura B Dunn; Jane Paik Kim; Maryam Rostami
Journal:  J Psychiatr Res       Date:  2018-09-15       Impact factor: 4.791

9.  Researchers' Perspectives on Informed Consent and Ethical Review of Biobank Research in South Africa: A Cross-Sectional Study.

Authors:  Erisa Mwaka; Lyn Horn
Journal:  J Empir Res Hum Res Ethics       Date:  2019-08-05       Impact factor: 1.742

10.  Informed Consent in Genome-Scale Research: What Do Prospective Participants Think?

Authors:  Susan Brown Trinidad; Stephanie M Fullerton; Julie M Bares; Gail P Jarvik; Eric B Larson; Wylie Burke
Journal:  AJOB Prim Res       Date:  2012-06-19
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