Research Participation as Work: Comparing the Perspectives of Researchers and Economically Marginalized Populations

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...

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Bibliographic Details
Published inAmerican journal of public health (1971) Vol. 102; no. 7; pp. 1254 - 1259
Main Authors Davidson, Peter, Page, Kimberly
Format Journal Article
LanguageEnglish
Published Washington, DC American Public Health Association 01.07.2012
Subjects
Advisory committees
Beggars
Biological and medical sciences
Biomedical Research - economics
Biomedical Research - ethics
CFR
Compensation
Consent
Drug overdose
Drug use
Economic research
Ethics
Ethnography
General aspects
Hepatitis
Hepatitis C
Humans
Marginality
Medical research
Medical sciences
Miscellaneous
Needle exchange programs
Participation
Patient Selection - ethics
Poverty
Public health
Public health. Hygiene
Public health. Hygiene-occupational medicine
Regulation
Research Personnel - ethics
Substance Abuse, Intravenous - economics
Substance Abuse, Intravenous - psychology
Views on Research Strategies
Viruses
Vulnerable Populations
United States > US
Participation
Perspective
Scientific research
Work
Population
Comparative study
Public health
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ISSN0090-0036
1541-0048
1541-0048
DOI10.2105/AJPH.2011.300418

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Summary: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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Peer Reviewed
P. Davidson wrote the initial draft of the article and led all revisions. K. Page provided extensive written feedback throughout the writing process, edited some sections, and reviewed the article as a whole.
Contributors
ISSN:0090-0036
1541-0048
1541-0048
DOI:10.2105/AJPH.2011.300418