Ethics Review Boards for Research With Human Participants: Past, Present, and Future

Abstract

The debate around ethics review boards (IRBs) has assumed an increasingly central place in academic practice and discourse. In this article, we summarize a unique workshop (study-group) that convened at the University of Haifa, attended by 27 academics from around the globe, representing nine countries in four continents. The participants presented data and points of view, which served as the basis for an open, interdisciplinary discussion. The group developed a set of recommendations, including working toward a transition from a review system to an advisory and validation system; focusing on respectful research approach to participants, rather than “ethical” research; building a procedure that focuses on feedback, rather than the process itself; recognizing that a unified examination need not necessarily be standardized; and constructing a feedback procedure in which researchers can respond to the review of their research.

Advancing discussion of ethics in mixed methods health services research

“…As planning a research design demands investigators think in an integrated way, it may be useful to think of MMR ethics in an integrated way. Ensuring MMR expertise on review boards, acting in a collaborative, feedback-based fashion [ 23 ], would facilitate guidance from IRBs on navigating ethical issues in MMR health services research. Given the increasing number of MMR projects in health services and implementation science [ 19 ], applications to ethics review boards provide an opportunity to gather empirical evidence on what strategies to promote ethical MMR are most feasible and effective.…”

Implications of the Revised Common Rule for Qualitative Health Research: Opportunities, Concerns, and Recommendations

“…In some ways, the RCR addresses longstanding debates about the appropriateness of federal oversight in relation to humanities and social sciences research, particularly noninterventional, qualitative research typical of anthropology and sociology. Critics have argued that the Common Rule, and the subsequent system of IRB review and approval, was developed for and by biomedical researchers and imposed on research fields with no representation in its development and for which it has limited applicability (Peled-Raz et al, 2020;Schrag, 2019). Arguments to limit or eliminate IRB oversight have centered on three key domains: the limited potential harms associated with such research (Dingwall, 2007(Dingwall, , 2008, the challenges of IRB oversight given the nature of qualitative research (Hodge, 2013;Metro, 2014), and the barriers to research created by the bureaucratic nature of the IRB process (Katz, 2006;Lederman, 2006;Lincoln & Tierney, 2004;Shweder, 2006;Wax, 1995;Wynn & Israel, 2018).…”

“…This framing of IRB review as a "chore" (Bosk, 2007, p. 196) focuses on the highly bureaucratic nature of IRB review and asserts that compliance with IRB standards distracts from deeper ethical considerations (Guillemin & Gillam, 2004;Metro, 2014;Ribeiro, 2006). Moreover, critics assert that this expectation for IRB review for all human subjects research studies indicates a lack of institutionalized trust in professional capacity and responsibility for such work (Peled-Raz et al, 2020).…”

“…This formal institutional oversight served to communicate that social scientific research is not, in fact, "merely a neutral endeavor of inquiry" (Sabati, 2019(Sabati, p. 1061. At the same time, the prominent existence of an external body that ensures ethical standards may have relieved researchers from truly engaging in a consideration of the ethical issues involved in a study (Peled-Raz et al, 2020;Shah, 2013), creating the potential for a level of "ethical complacency" (Shah, 2013) or "ethical deskilling" within the research team. Institutional Review Boards structures and processes may have resulted in limited true engagement with research ethics within individual research teams, such that ethical considerations have been centered on the process of getting through ethical review rather than any true embrace of "ethics in practice" (Blee & Currier, 2011;Dixon & Quirke, 2018).…”

Cultural work: Whitepower-normalcy and knowledge-power intersections in special education practice and scholarship

“…As a graduate student making sense of the historical and cultural ideologies that undergird educational structures, my critical research is grounded in an understanding of situated knowledges, as well as hegemonic processes and ideologies of power . By constructing knowledge that aligns with hegemonic ideologies as official knowledge, the IRB performs the hidden duty of censorship (Peled-Raz et al, 2021;Stark, 2006). This article discussed my experiences as I attempted to counter higher education's elite intellectualism, that McLaren discusses , which serves to limit knowledge construction .…”