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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| Published in | American journal of public health (1971) Vol. 102; no. 7; pp. 1254 - 1259 |
|---|---|
| Main Authors | , |
| Format | Journal Article |
| Language | English |
| Published |
Washington, DC
American Public Health Association
01.07.2012
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| Subjects | |
| Online Access | Get full text |
| ISSN | 0090-0036 1541-0048 1541-0048 |
| DOI | 10.2105/AJPH.2011.300418 |
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| 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. |
|---|---|
| AbstractList | 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. 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. [PUBLICATION 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. 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.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. |
| Author | Page, Kimberly Davidson, Peter |
| Author_xml | – sequence: 1 givenname: Peter surname: Davidson fullname: Davidson, Peter organization: While conducting the research, Peter Davidson was with the Departments of Epidemiology and Biostatistics and Social Sciences, University of California, San Francisco (UCSF), and, while writing the article, was with the Division of Global Public Health, School of Medicine, University of California, San Diego. Kimberly Page was with the Department of Epidemiology and Biostatistics, UCSF – sequence: 2 givenname: Kimberly surname: Page fullname: Page, Kimberly organization: While conducting the research, Peter Davidson was with the Departments of Epidemiology and Biostatistics and Social Sciences, University of California, San Francisco (UCSF), and, while writing the article, was with the Division of Global Public Health, School of Medicine, University of California, San Diego. Kimberly Page was with the Department of Epidemiology and Biostatistics, UCSF |
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| Cites_doi | 10.2307/3564136 10.2105/AJPH.2005.071233 10.1046/j.1360-0443.2001.969131911.x 10.1080/14659890500420095 10.1056/NEJM199907153410312 10.1046/j.1360-0443.2001.96912371.x 10.1056/NEJMp068080 10.1053/jhep.2001.25759 10.1086/605947 10.1002/ajmg.a.32559 10.3109/10826089809056260 10.1016/j.drugalcdep.2004.11.011 10.1080/01947640600870866 10.1097/00126334-200212010-00009 10.1097/01.aids.0000266459.49138.b3 |
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| Keywords | Participation Perspective Scientific research Work Population Comparative study Public health |
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| References_xml | – ident: bib7 doi: 10.2307/3564136 – volume-title: “Nothing About Us Without Us.” Greater, Meaningful Involvement of People Who Use Illegal Drugs: A Public Health, Ethical, and Human Rights Imperative year: 2005 ident: bib16 – ident: bib10 doi: 10.2105/AJPH.2005.071233 – ident: bib11 doi: 10.1046/j.1360-0443.2001.969131911.x – ident: bib5 doi: 10.1080/14659890500420095 – ident: bib18 – ident: bib8 doi: 10.1056/NEJM199907153410312 – volume: 78 start-page: 229 issue: 1 year: 2003 ident: bib20 publication-title: Wash Law Rev – ident: bib12 doi: 10.1046/j.1360-0443.2001.96912371.x – ident: bib21 doi: 10.1056/NEJMp068080 – ident: bib3 doi: 10.1053/jhep.2001.25759 – ident: bib4 doi: 10.1086/605947 – ident: bib24 doi: 10.1002/ajmg.a.32559 – start-page: 185 volume-title: Institutional Review Board: Management and Function year: 2002 ident: bib9 – volume: 3 start-page: A16 issue: 1 year: 2006 ident: bib22 publication-title: Prev Chronic Dis – ident: bib17 doi: 10.3109/10826089809056260 – ident: bib13 doi: 10.1016/j.drugalcdep.2004.11.011 – volume-title: Perception, Empathy, and Judgment: An Inquiry Into the Preconditions of Moral Performance year: 1994 ident: bib25 – ident: bib19 doi: 10.1080/01947640600870866 – volume-title: The Belmont Report year: 1979 ident: bib1 – volume-title: Frame Analysis: An Essay on the Organization of Experience year: 1986 ident: bib2 – ident: bib6 doi: 10.1097/00126334-200212010-00009 – ident: bib23 doi: 10.1097/01.aids.0000266459.49138.b3 – reference: 16672697 - N Engl J Med. 2006 May 4;354(18):1871-3 – reference: 16959652 - J Leg Med. 2006 Sep;27(3):263-87 – reference: 16356369 - Prev Chronic Dis. 2006 Jan;3(1):A16 – reference: 12447014 - J Acquir Immune Defic Syndr. 2002 Dec 1;31(4):422-31 – reference: 11672496 - Addiction. 2001 Sep;96(9):1319-25 – reference: 15893158 - Drug Alcohol Depend. 2005 Jun 1;78(3):275-81 – reference: 15732212 - Wash Law Rev. 2003 Feb;78(1):229-63 – reference: 17018826 - Am J Public Health. 2006 Nov;96(11):1996-2001 – reference: 11649367 - IRB. 1981 May;3(5):1-6 – reference: 19764883 - J Infect Dis. 2009 Oct 15;200(8):1216-26 – reference: 11672486 - Addiction. 2001 Sep;96(9):1237-8 – reference: 11431749 - Hepatology. 2001 Jul;34(1):180-7 – reference: 17413266 - AIDS. 2007 Apr;21 Suppl 2:S69-80 – reference: 19006210 - Am J Med Genet A. 2008 Dec 1;146A(23):3026-33 – reference: 9758016 - Subst Use Misuse. 1998 Sep;33(11):2323-51 – reference: 10403861 - N Engl J Med. 1999 Jul 15;341(3):198-203 |
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| Title | Research Participation as Work: Comparing the Perspectives of Researchers and Economically Marginalized Populations |
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