Ethics behind closed doors: do research ethics committees need secrecy?

Ashcroft, Richard; Pfeffer, Naomi

doi:10.1136/bmj.322.7297.1294

Cited by 40 publications

(24 citation statements)

References 10 publications

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“…Our results demystify what happens during a review and challenge the perception of the secretive review committee (Ashcroft & Pfeffer, 2001). Despite the supposed differences described in the literature between CBPR and "traditional" forms of research, most participants did not see this distinction and understood every project as having its own unique ethical dimensions.…”

Section: Discussioncontrasting

confidence: 69%

“Walking along beside the Researcher”: How Canadian REBs/IRBs are Responding to the Needs of Community-Based Participatory Research

Guţă

Nixon

Gahagan

et al. 2012

Journal of Empirical Research on Human Research Ethics

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Research ethics boards and institutional review boards (REBs/IRBs) have been criticized for relying on conceptions of research that privilege biomedical, clinical, and experimental designs, and for penalizing research that deviates from this model. Studies that use a community-based participatory research (CBPR) design have been identified as particularly challenging to navigate through existing ethics review frameworks. However, the voices of REB/IRB members and staff have been largely absent in this debate. The objective of this article is to explore the perspectives of members of Canadian university-based REBs/IRBs regarding their capacity to review CBPR protocols. We present findings from interviews with 24 Canadian REB/IRB members, staff, and other key informants. Participants were asked to describe and contrast their experiences reviewing studies using CBPR and mainstream approaches. Contrary to the perception that REBs/IRBs are inflexible and unresponsive, participants described their attempts to dialogue and negotiate with researchers and to provide guidance. Overall, these Canadian REBs/IRBs demonstrated a more complex understanding of CBPR than is typically characterized in the literature. Finally, we situate our findings within literature on relational ethics and explore the possibility of researchers and REBs/IRBs working collaboratively to find solutions to unique ethical tensions in CBPR.

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Section: Discussioncontrasting

confidence: 69%

“Walking along beside the Researcher”: How Canadian REBs/IRBs are Responding to the Needs of Community-Based Participatory Research

Guţă

Nixon

Gahagan

et al. 2012

Journal of Empirical Research on Human Research Ethics

View full text Add to dashboard Cite

show abstract

“…Identification of individuals possessing the requisite expertise may be accomplished, in part, by performing a search of the published literature utilizing online databases, such as PubMed and the Cochrane Central Register of Controlled Trials. Appropriate technology is available to accomplish centralized review without the need for appointed experts personally to attend each meeting of the board (McWilliams et al 2006); however, board meetings should be public sessions (Ashcroft and Pfeffer 2001), and members' scientific and ethical reviews should be made publicly available prior to meetings. This approach will also facilitate a necessary process by which review boards may be evaluated, so that, as described by Wood) the quality of their work may be ".…”

Section: A System Of Centralized (And Public) Research Reviewmentioning

confidence: 99%

Evaluation of Research Design by Research Ethics Committees: Misleading Reassurance and the Need for Substantive Reforms

Mann

2007

The American Journal of Bioethics

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“…Ashcroft and Pfeffer10 consider this possibility and rightly judge that in those rare cases where the names of specific individual research subjects must be mentioned, these cases should be considered as reserved business at a closed part of the meeting. It would indeed be inappropriate for the identifiable details of patients who are participating in research to be made public.…”

Section: Complications For Full Public Accessmentioning

confidence: 99%

Should research ethics committees meet in public?

Sheehan

2008

J Med Ethics

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Currently, research ethics committees (RECs) in the UK meet behind closed doors-their workings and most of the content of their decisions are unavailable to the general public. There is a significant tension between this current practice and a broader societal presumption of openness. As a form of public institution, the REC system exists to oversee research from the perspective of society generally. An important part of this tension turns on the kind of justification that might be offered for the REC system. In this paper I adapt Daniels and Sabin's accountability for reasonableness model for just resource allocation to the research ethics context to provide some structural legitimacy and to enable progress on the question of openness. After considering the consequences of adopting this model for open REC meetings, I then examine some reasons that might be offered against open meetings. These arguments do not overwhelm the core intuitions behind the presumption of openness but they do, I suggest, give us reason to retreat from fully public meetings. I conclude that there should be important adjustments to the system towards public accountability and that there are grounds for stopping short of fully public meetings.

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Ethics behind closed doors: do research ethics committees need secrecy?

Cited by 40 publications

References 10 publications

“Walking along beside the Researcher”: How Canadian REBs/IRBs are Responding to the Needs of Community-Based Participatory Research

“Walking along beside the Researcher”: How Canadian REBs/IRBs are Responding to the Needs of Community-Based Participatory Research

Evaluation of Research Design by Research Ethics Committees: Misleading Reassurance and the Need for Substantive Reforms

Should research ethics committees meet in public?

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