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  • 标题:The Limits of Collaboration: A Qualitative Study of Community Ethical Review of Environmental Health Research
  • 本地全文:下载
  • 作者:Moriah McSharry McGrath ; Robert E. Fullilove ; Molly Rose Kaufman
  • 期刊名称:American journal of public health
  • 印刷版ISSN:0090-0036
  • 出版年度:2009
  • 卷号:99
  • 期号:8
  • 页码:1510-1514
  • DOI:10.2105/AJPH.2008.149310
  • 语种:English
  • 出版社:American Public Health Association
  • 摘要:Objectives. We assessed the effectiveness of various systems of community participation in ethical review of environmental health research. Methods. We used situation analysis methods and a global workspace theoretical framework to conduct comparative case studies of 3 research organizations at 1 medical center. Results . We found a general institutional commitment to community review as well as personal commitment from some participants in the process. However, difficulty in communicating across divides of knowledge and privilege created serious gaps in implementation, leaving research vulnerable to validity threats (such as misinterpretation of findings) and communities vulnerable to harm. The methods used in each collaboration solved some, but not all, of the problems that hindered communication. Conclusions. Researchers, community spokespersons, and institutional review boards constitute organizational groups with strong internal ties and highly developed cultures. Few cross-linkages and little knowledge of each other cause significant distortion of information and other forms of miscommunication between groups. Our data suggest that organizations designed to protect human volunteers are in the best position to take the lead in implementing community review. It is well established that research can pose risks to participants. In recent years it has been recognized that research can also pose a threat to communities, because what individuals say when surveyed may be inappropriately generalized to their entire community. To protect communities from these and other potential harms, a new ethical principle, respect for communities, was established. 1 Community review of research is intended to protect against the collective harms that are a particular risk of environmental health research 2 and that are especially important in historically marginalized communities that have borne disproportionate burdens of both environmental degradation and ill-considered research. 3 Despite the ethical and scientific benefits of such a review, its implementation is piecemeal, with researchers, citizens, and community-based organizations struggling to achieve this oversight. Wallace et al. suggest that this problem can be understood from the perspective of global workspace theory, which posits that organizations are composed of cognitive work groups, systems designed to generate information and use it in making choices, decisions, appropriations, sanctions, and evaluations, among other tasks. 4 – 6 These work groups are internally organized teams that are externally linked to one another to create a larger system of distributed cognition. To be efficient, these interdependent teams must function both collectively and individually and must exchange information as rapidly and with as little distortion as possible. In the institution we studied, university researchers, community representatives, and ethical review boards were work groups whose separate but interrelated efforts formed a diffuse system that addressed the ethics of environmental health research. Wallace et al.'s model notes 3 obstacles to work group functioning: inattentional blindness, rate distortion, and policy or ideology. 4 – 6 Inattentional blindness is inherent in all observations, because it is impossible to take in all the information available in a situation. Rate distortion is a fundamental property of all information exchange: information travels through specific established channels, a process that is efficient but that inevitably causes some content to be lost or distorted, thus limiting the potential for innovation to emerge from the collaboration. Policy and ideology inform the starting assumptions that affect what people are able to see, hear, and use when confronted with new information; resource allocation and cultural constraints strongly influence this obstacle. We used Wallace et al.'s model as a tool to examine community ethical review for a variety of research projects involving environmental health. Although all of the projects shared an interest in human health outcomes, their methods ranged from molecular analysis of biological samples to in-depth qualitative research in specific neighborhoods. Studies were longitudinal and cross-sectional and conducted in various locations and populations. We defined the process of review as a collective inquiry in which researchers, clinicians, and community representatives constitute work groups that must create a functioning, shared workspace in which the review of environmental health research is conducted. Although intragroup dynamics such as leadership and facilitation are commonly understood to influence collaborative efforts, our global workspace approach was directed more broadly at systemic, intergroup issues. Here we present examples of the obstacles to efficient distributed cognition seen in an environmental health research workspace. We used situation analysis to assess the interactions among 3 work groups at 1 medical center in a major US city. We examined these interactions at each of the 6 steps of the research process: posing a question, designing a study to answer the question, obtaining institutional review board (IRB) approval, collecting data, analyzing data, and disseminating findings. Because research that is developed without local input, 7 or whose findings are inadequately communicated to participants, can harm volunteers and their communities, the conduct of each stage has ethical ramifications. In line with Wallace et al.'s theory that contexts shape cognition, we also examined the context of the work groups.
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