Literature DB >> 24134384

Redressing past wrongs: changing the common rule to increase minority voices in research.

William C Rencher1, Leslie E Wolf.   

Abstract

Numerous diseases disproportionately affect African Americans across socioeconomic, age, gender, and geographic groups. Despite the need for research into these disparities, African Americans are often underrepresented in research. The Tuskegee Syphilis Study receives much of the blame for this problem, but other contributing factors have also been identified. To date, government policies seeking to increase African American participation have had limited success, and recently proposed changes to the Common Rule do not address this problem. Therefore, we have proposed 3 changes: treating racial minorities as vulnerable, requiring community consultation in minority research, and increasing minority representation on institutional review boards. Coupled with other efforts, these changes could help increase minority representation in researching health disparities.

Mesh:

Year:  2013        PMID: 24134384      PMCID: PMC3828970          DOI: 10.2105/AJPH.2013.301356

Source DB:  PubMed          Journal:  Am J Public Health        ISSN: 0090-0036            Impact factor:   9.308


  23 in total

1.  The use of blacks for medical experimentation and demonstration in the Old South.

Authors:  Todd L Savitt
Journal:  J South Hist       Date:  1982-08

2.  Utilization of health care services and willingness to participate in future medical research: the role of race and social support.

Authors:  Besangie Sellars; Mary A Garza; Craig S Fryer; Stephen B Thomas
Journal:  J Natl Med Assoc       Date:  2010-09       Impact factor: 1.798

3.  Challenging assumptions about minority participation in US clinical research.

Authors:  Jill A Fisher; Corey A Kalbaugh
Journal:  Am J Public Health       Date:  2011-10-20       Impact factor: 9.308

4.  Justice and fairness in the Kennedy Krieger Institute lead paint study: the ethics of public health research on less expensive, less effective interventions.

Authors:  David R Buchanan; Franklin G Miller
Journal:  Am J Public Health       Date:  2006-03-29       Impact factor: 9.308

5.  Community consultation: not the problem--an important part of the solution.

Authors:  Neal W Dickert; Jeremy Sugarman
Journal:  Am J Bioeth       Date:  2006 May-Jun       Impact factor: 11.229

6.  Narrative constructions of health care issues and policies: the case of President Clinton's apology-by-proxy for the Tuskegee syphilis experiment.

Authors:  Heather J Carmack; Benjamin R Bates; Lynn M Harter
Journal:  J Med Humanit       Date:  2008-06

7.  The continuing legacy of the Tuskegee Syphilis Study: considerations for clinical investigation.

Authors:  G Corbie-Smith
Journal:  Am J Med Sci       Date:  1999-01       Impact factor: 2.378

8.  Attitudes and beliefs of African Americans toward participation in medical research.

Authors:  G Corbie-Smith; S B Thomas; M V Williams; S Moody-Ayers
Journal:  J Gen Intern Med       Date:  1999-09       Impact factor: 5.128

9.  Identifying the "vulnerables" in biomedical research: the vox populis from the Tuskegee Legacy Project.

Authors:  Christopher T Chiu; Ralph V Katz
Journal:  J Public Health Dent       Date:  2011       Impact factor: 1.821

10.  Why are ethnic minorities under-represented in US research studies?

Authors:  Aziz Sheikh
Journal:  PLoS Med       Date:  2005-12-27       Impact factor: 11.069

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  12 in total

1.  Factors associated with participation by African Americans in a study of the genetics of glaucoma.

Authors:  Rupin Parikh; Laura O'Keefe; Rebecca Salowe; Makayla Mccoskey; Wei Pan; Prithvi Sankar; Eydie Miller-Ellis; Victoria Addis; Amanda Lehman; Maureen Maguire; Joan O'Brien
Journal:  Ethn Health       Date:  2017-07-01       Impact factor: 2.772

2.  Authorization of tissues from deceased patients for genetic research.

Authors:  Maureen Wilson-Genderson; K Laura Barker; Heather M Gardiner; Maghboeba Mosavel; Jeffrey Thomas; Laura A Siminoff
Journal:  Hum Genet       Date:  2017-12-04       Impact factor: 4.132

3.  Public Health's Approach to Systemic Racism: a Systematic Literature Review.

Authors:  Billie Castle; Monica Wendel; Jelani Kerr; Derrick Brooms; Aaron Rollins
Journal:  J Racial Ethn Health Disparities       Date:  2018-05-04

4.  African American women's perceptions and attitudes regarding participation in medical research: the Mayo Clinic/The Links, Incorporated partnership.

Authors:  LaPrincess C Brewer; Sharonne N Hayes; Monica W Parker; Joyce E Balls-Berry; Michele Y Halyard; Vivian W Pinn; Carmen Radecki Breitkopf
Journal:  J Womens Health (Larchmt)       Date:  2014-07-21       Impact factor: 2.681

5.  Attitudes and experiences regarding genetic research among persons of African descent.

Authors:  Denise M Scott; Veronica G Thomas; Jane Otado; Faun Rockcliffe; Omotomilade Olopoenia; Dietrich Johnson; Shawneequa Callier
Journal:  J Community Genet       Date:  2019-05-06

6.  Effects of resistance training on depression and cardiovascular disease risk in Black men: Protocol for a randomized controlled trial.

Authors:  Andrew M Busch; Mark E Louie; Nicholas J SantaBarbara; Alex A Ajayi; Neil Gleason; Shira I Dunsiger; Michael P Carey; Joseph T Ciccolo
Journal:  Ment Health Phys Act       Date:  2019-09-12

Review 7.  A Culturally Sensitive Approach to Large-Scale Prevention Studies: A Case Study of a Randomized Controlled Trial With Low-Income Latino Communities.

Authors:  David E Rangel; Carmen R Valdez
Journal:  J Prim Prev       Date:  2017-12

8.  Hypertension Prevalence, Awareness and Control Levels among Ghawarna: An African-Descendant Ethnic Minority in the Jordan Valley.

Authors:  Khalid A Kheirallah; Mohammed Liswi; Rami Alazab; Zeyad Bataineh; Sukaina Alzyoud; Jomana Alsulaiman; Hashem Jaddou
Journal:  Ethn Dis       Date:  2015-08-07       Impact factor: 1.847

9.  Perceptions of family history and genetic testing and feasibility of pedigree development among African Americans with hypertension.

Authors:  Christina M Pettey; Jean C McSweeney; Katharine E Stewart; Elvin T Price; Mario A Cleves; Seongkum Heo; Elaine Souder
Journal:  Eur J Cardiovasc Nurs       Date:  2014-10-16       Impact factor: 3.908

10.  Building and Sustaining a Community Advisory Board of African American Older Adults as the Foundation for Volunteer Research Recruitment and Retention in Health Sciences.

Authors:  Jamie Mitchell; Tam Perry; Vanessa Rorai; Joan Ilardo; Peter A Lichtenberg; James S Jackson
Journal:  Ethn Dis       Date:  2020-11-19       Impact factor: 2.006

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