文章基本信息

标题：Research Participation as Work: Comparing the Perspectives of Researchers and Economically Marginalized Populations
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作者：Peter Davidson ; Kimberly Page
期刊名称：American journal of public health
印刷版ISSN：0090-0036
出版年度：2012
卷号：102
期号：7
页码：1254-1259
DOI：10.2105/AJPH.2011.300418
语种：English
出版社：American Public Health Association
摘要：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. AS RESEARCHERS, OUR CON structions of what is and what is not “ethical research” have been heavily informed by our knowledge of the terrible ethical failures of members of our tribe within the past 70 years—the willing participation of some scientists in human experimentation on the victims of the Holocaust, the Tuskegee experiment, Willowbrook, the Milgram experiments, and numerous other large and small abuses of human beings. Responses to these horrors, such as the Nuremberg Code, the Declaration of Helsinki, the Belmont Report, and their derivative processes, protocols, and laws have all sought to describe and codify what comprises ethical research, and in doing so prevent future abuses. In the United States, the most important of these has been the 1979 Belmont Report, a product of the then–US Department of Health, Education, and Welfare. The Belmont Report enshrines 3 principles for research: respect for persons (protecting the autonomy of all people and treating them with courtesy and respect and allowing for informed consent), beneficence (maximizing benefits for the research project while minimizing risks to the research participants), and justice (ensuring reasonable, nonexploitative, and well-considered procedures are administered fairly). 1 The policy approach described in the Belmont Report is largely implemented in US law through Title 45 (Public Welfare), Part 46 (Protection of Human Subjects) of the US Code of Federal Regulations (hereafter 45 CFR 46), which provides minimum standards required for federally funded research involving human participants. Taken as a whole, 45 CFR 46 and the history behind it create what the sociologist Erving Goffman referred to as a “frame,” a way of ordering and making sense of a situation that has consequences for how we understand subsequent events. 2 A simple example of how framing can have a significant impact on the way an individual understands an event can be seen in a common medical procedure such as a testicular or cervical examination: a relative stranger asks the individual to disrobe, then views and even handles the individual’s genitals. Under almost any other circumstance, this would be experienced as a violating and even traumatic event because the individual would understand the process as an assault. However, because the event happens within a framework shared by both participants, one that locates the medical practitioner as someone acting in the best interests of the individual’s health, and the individual as someone who has sought out the examination for the benefit of his or her health, such an examination is rarely more than mildly discomforting. In the case of 45 CFR 46, the code likewise contains a number of elements that together act to create a frame that shapes how researchers and institutional review boards (IRBs) interpret and understand situations that arise in the course of research involving human participants. We describe possible unintended consequences of this framework in the context of conducting research with young, economically marginal users of illicit drugs. This article is drawn from our experience conducting research with young injection drug users in San Francisco over a 12-year period.