Perspective: A Review of Improved Ethical Practices in Environmental and Public Health Research: Case Examples From Native Communities

Quigley, Dianne

doi:10.1177/1090198104272053

Cited by 57 publications

(48 citation statements)

References 12 publications

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“…Second, the growing interest in addressing the interrelatedness of historic trauma and health disparities in indigenous populations and the inherent complexities of unraveling the interconnected components and concepts related to historic trauma and health can best be understood by discussions and conversations with indigenous communities (29,30). Third, a legacy of harm from past research, as well as mistrust of researchers, warrants the use of CBPR as a means to ensure that all phases of a research project, from the development of research questions to research design and data collection methods to dissemination of results, have community input and approval (26,31). Fourth, CBPR provides a forum to ensure timely communication of research results to the community by using information dissemination mechanisms that best meet the community's needs.…”

Section: Implications For Future Researchmentioning

confidence: 99%

Sexual Health and Sexually Transmitted Infections in the North American Arctic

Law

Rink

Mulvad

et al. 2008

Emerg. Infect. Dis.

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Section: Implications For Future Researchmentioning

confidence: 99%

Sexual Health and Sexually Transmitted Infections in the North American Arctic

Law

Rink

Mulvad

et al. 2008

Emerg. Infect. Dis.

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“…10,12,[29][30][31][32][33][34] Several authors have proposed elements of the research process and its review to insure consideration of respect for communities. 11,22,28,30,[35][36][37][38][39][40] Major themes in our focus groups support such efforts. …”

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confidence: 99%

Ethics of Health Research in Communities: Perspectives From the Southwestern United States

Williams

Willging²,

Quintero³

et al. 2010

The Annals of Family Medicine

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PURPOSEThe increasing attention paid to community-based research highlights the question of whether human research protections focused on the individual are adequate to safeguard communities. We conducted a study to explore how community members perceive low-risk health research, the adequacy of human research protection processes, and the ethical conduct of community-based research.METHODS Eighteen focus groups were conducted among rural and urban Hispanic and Native American communities in New Mexico using a semistructured guide. Group transcriptions were analyzed using iterative readings and coding, with review of the analytic summary by group members.RESULTS Although participants recognized the value of health research, many also identifi ed several adverse effects of research in their communities, including social (community and individual labeling, stigmatization, and discrimination) and economic (community job losses, increased insurance rates, and loss of community income). A lack of community benefi cence was emphasized by participants who spoke of researchers who fail to communicate results adequately or assist with follow-through. Many group members did not believe current human research and data privacy processes were adequate to protect or assist communities.CONCLUSIONS Ethical review of community-based health research should apply the Belmont principles to communities. Researchers should adopt additional approaches to community-based research by engaging communities as active partners throughout the research process, focusing on community priorities, and taking extra precautions to assure individual and community privacy. Plans for meaningful dissemination of results to communities should be part of the research design. Ann Fam Med 2010;8:433-439. doi:10.1370/afm.1138. INTRODUCTIONC onverging organizational, conceptual, and funding developments during the last decade have raised the profi le of health and medical research conducted in communities. At the same time, the number of practice-based research networks, organizations that specifi cally undertake research in primary care and community settings, has grown rapidly. [1][2][3][4][5] With these developments, there has been increasing interest in the concept of community-based participatory research, whereby community members have more involvement in all stages of the research process. 6,7 More recently, the National Institutes of Health's Clinical and Translational Science Awards program has included explicit expectations for community engagement in research and for development of research that can directly benefi t communities. E T HIC S OF HE A LT H R ESE A RCH IN COMMUNIT IESThis growing interest in conducting research that directly or indirectly involves communities raises a concern about the adequacy of research protections. Human research protections established and expanded during the last 60 years have centered on the rights and safety of the individual in the research process. Indeed, the 3 principles of The Belmont Report (re...

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“…The Co-PIs followed the research guidelines as outlined by Dianne Quigley, which included the following components: (a) determining whether the investigator's goals and community's needs are compatible; (b) developing the collaboration or partnership with the community (including Community Advisory Committees, collaborative agreements and compacts, equity issues, and cultural sensitivity); (c) informed consent issues (including education on risks and benefits, individual and community autonomy, and “voluntariness”); (d) community knowledge collection; (e) research data management (including confidentiality, control and ownership, interpretation, dissemination, and publication); and (f) sustainability of research efforts. 25 Many tribal governments hold regulatory authority over research, which is a form of “community consent.” Other tribal councils rely on voluntary participation by both researchers and tribe members, which is “community consultation.” 26,27,28,29,30,31 Because the Bronx is a highly heterogeneous urban community, the latter model of community input seemed more feasible.…”

Section: Methodsmentioning

confidence: 99%

The Development of the Bronx Community Research Review Board: A Pilot Feasibility Project for a Model of Community Consultation

Campo¹,

Casado²,

Spencer³

et al. 2013

cpr

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Background: The Bronx Community Research Review Board (BxCRRB) is a community–academic partnership (CAP) between the Albert Einstein College of Medicine and The Bronx Health Link (BHL). Rather than asking clinical investigators to create their own individual process de novo, we have developed an innovative, structural approach to achieve community consultation in research planning, implementation, and dissemination that involves and educates the public about research. Objectives: To collaboratively develop (1) an independent research review board of volunteer community residents and repre sentatives that tests a model of community consultation, dialogue, and “community-informed consent” by reviewing community-based research proposals; and (2) to increased understanding of and participation in clinical research in the Bronx. Methods: (1) Recruiting members from the Health and Human Services committees of community boards, focus groups, and community health events; (2) interviewing and selecting members based on community involvement, experiences, availability, and demographics of the Bronx; (3) training members in bioethics and research methods; and (4) facilitating meetings and discussions between clinical researchers and the BxCRRB for research review and consultation. Results: There is substantial interest among Bronx residents in participating in the BxCRRB. The BxCRRB provided feedback to researchers to ensure the protection of participants’ rights, to improve research design by promoting increased accountability to the community, and expanded its scope to include earlier stages of the research process. Conclusion: The BxCRRB is a viable model for community consultation in research, but more time for implementation and evolution is needed to improve its review practices and ensure community input at all stages of the research process.

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Perspective: A Review of Improved Ethical Practices in Environmental and Public Health Research: Case Examples From Native Communities

Cited by 57 publications

References 12 publications

Sexual Health and Sexually Transmitted Infections in the North American Arctic

Sexual Health and Sexually Transmitted Infections in the North American Arctic

Ethics of Health Research in Communities: Perspectives From the Southwestern United States

The Development of the Bronx Community Research Review Board: A Pilot Feasibility Project for a Model of Community Consultation

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