What Can IRBs Learn From CABs? A Qualitative Analysis of the Experiences of Recruitment and Training of Nonscientist Members on Research Review Boards

Abstract

Governments, funders, and institutional policies increasingly encourage and even mandate the involvement of nonscientists in the ethical review of research, most famously in institutional review boards (IRBs), but also on community advisory boards (CABs) and other committees that contribute to research governance. In spite of these requirements, few have examined how different factors such as recruitment strategies, training, and different qualifications shape the contributions of nonscientists to the research enterprise. This pilot study begins to fill in this lacuna by interviewing nonscientist members of IRBs and community members of CABs. Results suggest patterned differences in demographics, recruitment strategies, training, and perceived qualifications between community members on these two types of boards with potential implications for how we perceive the scope of contributions that nonscientists can provide to the ethical review of research and the strategic ways these contributions can be elicited.

Keywords

federal policies/guidelines/Office for Human Research Protections in-depth interviews research ethics committee/IRB review CBPR research ethics other behavioral/social science

Get full access to this article

View all access options for this article.

References

Allison

R. D.

Abbott

L. J.

Wichman

(2008). Roles and experiences of non-scientist institutional review board members at the National Institutes of Health. IRB, 30(5), 8-13.

Anderson

E. E.

(2006). A qualitative study of non-affiliated, non-scientist institutional review board members. Accountability in Research, 13, 135-155.

Cox

L. E.

Rouff

J. R.

Svendsen

K. H.

Markowitz

Abrams

D. I.

(1998). Community advisory boards: Their role in AIDS clinical trials. Health & Social Work, 23, 290-297.

Dyer

(2004). Rationalising public participation in the health service: The case of research ethics committees. Health & Place, 10, 339-348.

Kuyare

M. S.

Marathe

P. A.

Kuyare

S. S.

Thatte

U. M.

(2015). Perceptions and experiences of community members serving on institutional review boards: A questionnaire based study. HEC Forum, 27, 61-77. Retrieved from http://link.springer.com/article/10.1007/s10730-014-9263-3

Lidz

C. W.

Simon

L. J.

Seligowski

A. V.

Myers

Gardner

Candilis

P. J.

. . . Appelbaum

P. S.

(2012). The participation of community members on medical institutional review boards. Journal of Empirical Research on Human Research Ethics, 7(1), 1-8.

Morin

S. F.

Maiorana

Koester

K. A.

Sheon

N. M.

Richards

T. A.

(2003). Community consultation in HIV prevention research: A study of community advisory boards at 6 research sites. JAIDS Journal of Acquired Immune Deficiency Syndromes, 33, 513-520.

Newman

S. D.

Andrews

J. O.

Magwood

G. S.

Jenkins

Cox

M. J.

Williamson

D. C.

(2011). Community advisory boards in community-based participatory research: A synthesis of best processes. Preventing Chronic Disease, 8(3), A70.

Porter

J. P.

(1986). What are the ideal characteristics of unaffiliated/nonscientist IRB members? IRB, 8(3), 1-6.

10.

Porter

J. P.

(1987). How unaffiliated/nonscientist members of institutional review boards see their roles. IRB, 9(6), 1-6.

11.

Sengupta

(2003). The roles and experiences of nonaffiliated and non-scientist members of institutional review boards. Academic Medicine, 78, 212-218.

12.

Solomon

(2016). Too many rationales, not enough reason: A call to examine the goals of including lay members on institutional review boards. Accountability in Research, 23, 4-22.

13.

Strauss

A. L.

Corbin

(1990). Basics of Qualitative Research: Grounded theory procedures and techniques (p.97). Newbury Park, CA: Sage.