Literature DB >> 26213403

Fulfilling Ethical Responsibility: Moving Beyond the Minimal Standards of Protecting Human Subjects from Research Harm.

James R Hébert, William A Satariano, Daniela B Friedman, Cheryl A Armstead, Allen Greiner, Tisha M Felder, Thomas A Coggins, Sora Tanjasiri, Kathryn L Braun.   

Abstract

PROBLEM: Rules for protecting human subjects, in place federally since 1974, have focused primarily on guarding against placing research subjects at social, physical, or psychological risk or violating their privacy and confidentiality. Nevertheless, high-risk communities are routinely subjected to "sins of omission," which limit access to potentially significant research opportunities and result in the absence of studies that could confer high degree of community beneficence. PURPOSE OF ARTICLE: To describe "sins of omission" and provide examples from the Community Networks Program Centers (CNPC) to illustrate how community-based participatory research (CBPR) can prevent them. KEY POINTS: CBPR is an effective antidote to sins of omission. Activities undertaken by the CNPCs illustrate how adherence to CBPR principles can improve research access and outcomes.
CONCLUSIONS: By working with community members as partners, we expand the concept of beneficence to include "community beneficence," thus reducing the probability of "sins of omission."

Entities:  

Mesh:

Year:  2015        PMID: 26213403      PMCID: PMC4659710          DOI: 10.1353/cpr.2015.0021

Source DB:  PubMed          Journal:  Prog Community Health Partnersh        ISSN: 1557-0541


  38 in total

1.  Community-based participatory research: a capacity-building approach for policy advocacy aimed at eliminating health disparities.

Authors:  Barbara A Israel; Chris M Coombe; Rebecca R Cheezum; Amy J Schulz; Robert J McGranaghan; Richard Lichtenstein; Angela G Reyes; Jaye Clement; Akosua Burris
Journal:  Am J Public Health       Date:  2010-09-23       Impact factor: 9.308

2.  Building Native Hawaiian capacity in cancer research and programming. A legacy of 'Imi Hale.

Authors:  Kathryn L Braun; Joann U Tsark; LorrieAnn Santos; Nia Aitaoto; Clayton Chong
Journal:  Cancer       Date:  2006-10-15       Impact factor: 6.860

3.  Community-based participatory research contributions to intervention research: the intersection of science and practice to improve health equity.

Authors:  Nina Wallerstein; Bonnie Duran
Journal:  Am J Public Health       Date:  2010-02-10       Impact factor: 9.308

4.  Researchers, elites, and people in a rapidly changing world.

Authors:  J Galtung
Journal:  Prog Clin Biol Res       Date:  1983

5.  Using community-based research methods to design cancer patient navigation training.

Authors:  Kathryn L Braun; Amanda Allison; Joann U Tsark
Journal:  Prog Community Health Partnersh       Date:  2008

6.  Mapping cancer mortality-to-incidence ratios to illustrate racial and sex disparities in a high-risk population.

Authors:  James R Hébert; Virginie G Daguise; Deborah M Hurley; Rebecca C Wilkerson; Catishia M Mosley; Swann A Adams; Robin Puett; James B Burch; Susan E Steck; Susan W Bolick-Aldrich
Journal:  Cancer       Date:  2009-06-01       Impact factor: 6.860

7.  The historical, ethical, and legal background of human-subjects research.

Authors:  Todd W Rice
Journal:  Respir Care       Date:  2008-10       Impact factor: 2.258

8.  Institutional review board challenges related to community-based participatory research on human exposure to environmental toxins: a case study.

Authors:  Phil Brown; Rachel Morello-Frosch; J G Brody; Rebecca Gasior Altman; Ruthann A Rudel; Laura Senier; Carla Pérez; Ruth Simpson
Journal:  Environ Health       Date:  2010-07-16       Impact factor: 5.984

9.  Soil zinc content, groundwater usage, and prostate cancer incidence in South Carolina.

Authors:  Sara E Wagner; James B Burch; Jim Hussey; Tom Temples; Susan Bolick-Aldrich; Catishia Mosley-Broughton; Yuan Liu; James R Hebert
Journal:  Cancer Causes Control       Date:  2008-10-24       Impact factor: 2.506

Review 10.  Interdisciplinary, translational, and community-based participatory research: finding a common language to improve cancer research.

Authors:  James R Hebert; Heather M Brandt; Cheryl A Armstead; Swann A Adams; Susan E Steck
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  2009-03-31       Impact factor: 4.254

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  9 in total

1.  Recruiting Participants into Pilot Trials: Techniques for Researchers with Shoestring Budgets.

Authors:  Rodney P Joseph; Colleen Keller; Barbara E Ainsworth
Journal:  Calif J Health Promot       Date:  2016

2.  Active involved community partnerships: co-creating implementation infrastructure for getting to and sustaining social impact.

Authors:  Renée I Boothroyd; Aprille Y Flint; A Mark Lapiz; Sheryl Lyons; Karen Lofts Jarboe; William A Aldridge
Journal:  Transl Behav Med       Date:  2017-09       Impact factor: 3.046

3.  Accelerating Research Collaborations Between Academia and Federally Qualified Health Centers: Suggestions Shaped by History.

Authors:  James R Hébert; Swann Arp Adams; John R Ureda; Vicki M Young; Heather M Brandt; Sue P Heiney; Jessica S Seel; Daniela B Friedman
Journal:  Public Health Rep       Date:  2017-11-28       Impact factor: 2.792

4.  Beyond the Belmont Principles: A Community-Based Approach to Developing an Indigenous Ethics Model and Curriculum for Training Health Researchers Working with American Indian and Alaska Native Communities.

Authors:  Myra Parker; Cynthia Pearson; Caitlin Donald; Celia B Fisher
Journal:  Am J Community Psychol       Date:  2019-07-29

5.  A Legacy of Science and Community Engagement via the Community Networks Program.

Authors:  Claudia R Baquet
Journal:  Prog Community Health Partnersh       Date:  2015

6.  Community-Based Participatory Research Adds Value to the National Cancer Institute's Research Portfolio.

Authors:  James R Hébert; Kathryn L Braun; Cathy D Meade; Joan Bloom; Erin Kobetz
Journal:  Prog Community Health Partnersh       Date:  2015

7.  A Personal Touch: The Most Important Strategy for Recruiting Latino Research Participants.

Authors:  Alexandra A García; Julie A Zuñiga; Czarina Lagon
Journal:  J Transcult Nurs       Date:  2016-04-25       Impact factor: 1.959

8.  Stakeholder-driven, consensus development methods to design an ethical framework and guidelines for engaged research.

Authors:  Giselle Corbie-Smith; Mysha Wynn; Alan Richmond; Stuart Rennie; Melissa Green; Stephanie M Hoover; Sable Watson-Hopper; Kyle Simone Nisbeth
Journal:  PLoS One       Date:  2018-06-21       Impact factor: 3.240

9.  Strategies for conducting health research with Latinos during times of political incivility.

Authors:  Rayna Sage; Sandra Benavides-Vaello; Erin Flores; Sydnie LaValley; Patrick Martyak
Journal:  Nurs Open       Date:  2018-06-19
  9 in total

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