Literature DB >> 22594754

Research participation as work: comparing the perspectives of researchers and economically marginalized populations.

Peter Davidson1, Kimberly Page.   

Abstract

We examined the historical and regulatory framework of research with human participants in the United States, and described some possible unintended consequences of this framework in the context of paying young injection drug users for their time participating in behavioral and medical research. We drew upon our own experiences while conducting a long-running epidemiological study of hepatitis C virus infection. We found that existing ethical and regulatory framings of research participation may lead to injustices from the perspectives of research participants. We propose considering research participation as a specialized form of work and the use of community advisory boards to facilitate discussion about appropriate compensation for research participation among economically marginalized populations.

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Year:  2012        PMID: 22594754      PMCID: PMC3478002          DOI: 10.2105/AJPH.2011.300418

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


  16 in total

1.  On paying money to research subjects: 'due' and 'undue' inducements.

Authors:  Ruth Macklin
Journal:  IRB       Date:  1981-05

2.  Do research payments precipitate drug use or coerce participation?

Authors:  David S Festinger; Douglas B Marlowe; Jason R Croft; Karen L Dugosh; Nicole K Mastro; Patricia A Lee; David S Dematteo; Nicholas S Patapis
Journal:  Drug Alcohol Depend       Date:  2005-01-23       Impact factor: 4.492

3.  Compensation for injured research subjects.

Authors:  Robert Steinbrook
Journal:  N Engl J Med       Date:  2006-05-04       Impact factor: 91.245

4.  Compensation for research-related injuries. Ethical and legal issues.

Authors:  David B Resnik
Journal:  J Leg Med       Date:  2006-09

5.  Exploring the ethics of clinical research in an urban community.

Authors:  Christine Grady; Lindsay A Hampson; Gwenyth R Wallen; Migdalia V Rivera-Goba; Kelli L Carrington; Barbara B Mittleman
Journal:  Am J Public Health       Date:  2006-10-03       Impact factor: 9.308

6.  Hepatitis C virus infection and needle exchange use among young injection drug users in San Francisco.

Authors:  J A Hahn; K Page-Shafer; P J Lum; K Ochoa; A R Moss
Journal:  Hepatology       Date:  2001-07       Impact factor: 17.425

7.  Researcher liability for negligence in human subject research: informed consent and researcher malpractice actions.

Authors:  Roger L Jansson
Journal:  Wash Law Rev       Date:  2003-02

8.  Acute hepatitis C virus infection in young adult injection drug users: a prospective study of incident infection, resolution, and reinfection.

Authors:  Kimberly Page; Judith A Hahn; Jennifer Evans; Stephen Shiboski; Paula Lum; Eric Delwart; Leslie Tobler; William Andrews; Lia Avanesyan; Stewart Cooper; Michael P Busch
Journal:  J Infect Dis       Date:  2009-10-15       Impact factor: 5.226

9.  Ethical issues in the NIMH Collaborative HIV/STD Prevention Trial.

Authors: 
Journal:  AIDS       Date:  2007-04       Impact factor: 4.177

10.  Community consultation and communication for a population-based DNA biobank: the Marshfield clinic personalized medicine research project.

Authors:  Catherine A McCarty; Donna Chapman-Stone; Teresa Derfus; Philip F Giampietro; Norman Fost
Journal:  Am J Med Genet A       Date:  2008-12-01       Impact factor: 2.802

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  16 in total

1.  "Money Helps": People who inject drugs and their perceptions of financial compensation and its ethical implications.

Authors:  Roberto Abadie; Brandon Brown; Celia B Fisher
Journal:  Ethics Behav       Date:  2018-11-05

2.  Structural and Interpersonal Benefits and Risks of Participation in HIV Research: Perspectives of Female Sex Workers in Guatemala.

Authors:  Shira M Goldenberg; Monica Rivera Mindt; Teresita Rocha Jimenez; Kimberly C Brouwer; Sonia Morales Miranda; Celia B Fisher
Journal:  Ethics Behav       Date:  2014-08-14

3.  Why female sex workers participate in HIV research: the illusion of voluntariness.

Authors:  Elizabeth Reed; Celia B Fisher; Kim M Blankenship; Brooke S West; Kaveh Khoshnood
Journal:  AIDS Care       Date:  2016-12-28

4.  "He's under oath": Privacy and Confidentiality Views Among People Who Inject Drugs Enrolled in a Study of Social Networks and Human Immunodeficiency Virus/Hepatitis C Virus Risk.

Authors:  Roberto Abadie; Celia Fisher; Kirk Dombrowski
Journal:  J Empir Res Hum Res Ethics       Date:  2021-03-26       Impact factor: 1.742

5.  "We're giving you something so we get something in return": Perspectives on research participation and compensation among people living with HIV who use drugs.

Authors:  Alexandra B Collins; Carol Strike; Adrian Guta; Rosalind Baltzer Turje; Patrick McDougall; Surita Parashar; Ryan McNeil
Journal:  Int J Drug Policy       Date:  2016-10-22

6.  Confidentiality, privacy, and respect: experiences of female sex workers participating in HIV research in Andhra Pradesh, India.

Authors:  Elizabeth Reed; Kaveh Khoshnood; Kim M Blankenship; Celia B Fisher
Journal:  J Empir Res Hum Res Ethics       Date:  2014-02       Impact factor: 1.742

7.  Understanding Willingness to Participate in HIV Biomedical Research: A Mixed Methods Investigation.

Authors:  Ji-Young Lee; Sara M St George; Torsten B Neilands; Allan Rodriguez; Daniel J Feaster; Adam W Carrico
Journal:  AIDS Behav       Date:  2021-06-15

8.  "I can't do this, it's too much": building social inclusion in cancer diagnosis and treatment experiences of Aboriginal people, their carers and health workers.

Authors:  Carla Treloar; Rebecca Gray; Loren Brener; Clair Jackson; Veronica Saunders; Priscilla Johnson; Magdalena Harris; Phyllis Butow; Christy Newman
Journal:  Int J Public Health       Date:  2013-04-21       Impact factor: 3.380

9.  The perspectives of structurally vulnerable people who use drugs on volunteer stipends and work experiences provided through a drug user organization: Opportunities and limitations.

Authors:  Geoff Bardwell; Solanna Anderson; Lindsey Richardson; Lorna Bird; Hugh Lampkin; Will Small; Ryan McNeil
Journal:  Int J Drug Policy       Date:  2018-03-02

10.  Establishing a community-based participatory research partnership among people who use drugs in Ottawa: the PROUD cohort study.

Authors:  Lisa Lazarus; Ashley Shaw; Sean LeBlanc; Alana Martin; Zack Marshall; Kristen Weersink; Dolly Lin; Kira Mandryk; Mark W Tyndall
Journal:  Harm Reduct J       Date:  2014-10-13
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