A Cross Sectional Survey of Recruitment Practices, Supports, and Perceived Roles for Unaffiliated and Non-scientist Members of IRBs

Abstract

Background

Institutional Review Boards (IRBs) are federally mandated to include both nonscientific and unaffiliated representatives in their membership. Despite this, there is no guidance or policy on the selection of unaffiliated or non-scientist members and reports indicate a lack of clarity regarding members’ roles. In the present study we sought to explore processes of recruitment, training, and the perceived roles for unaffiliated and non-scientist members of IRBs.

Methods

We distributed a self-administered REDCap survey of members of the Association for the Accreditation of Human Research Protection Programs familiar with IRB member recruitment. The survey included closed and open-ended questions regarding: the operation of the HRPP/IRB(s), how unaffiliated and non-scientist members are recruited, whether they had faced challenges recruiting for these roles, and training and mentorship offered. The survey also collected information regarding the perceived value and roles of unaffiliated and non-scientist members.

Results

76 responses were included in the analysis (38% completion rate). The most common approach for recruitment was referral from current IRB members, with almost half of respondents indicating challenges recruiting unaffiliated members. Over 75% indicated no additional training was provided to unaffiliated or non-scientist members compared to affiliated or scientist members. Most common supports provided were travel/parking expenses and honoraria. Commonly perceived roles were to provide an independent voice from the participant perspective, notably regarding consent processes and materials.

Conclusions

Respondents indicated challenges in defining unaffiliated and non-scientist members and limited practices toward recruitment and support. Future work should more closely examine the challenges in defining these roles and applying the definitions in practice, as well as strategies that may improve recruitment and retention of unaffiliated and non-scientist members.

Keywords:

• Survey
• unaffiliated
• non-scientist
• Institutional Review Board
• research ethics

Acknowledgments

We thank the leadership of AAHRPP and its members for their support in administering and completing the survey. We would also like to thank Dr Liza Dawson for her contributions to the design of the survey and its implementation.

Disclosure statement

Disclaimer: The views expressed by Dr. Taylor are her own. They do not represent the position or policy of the NIH, DHHS, or US government. The views expressed by Dr. Schonfeld are her own. They do not represent the position or policy of the VA or US Government.

Funding

No specific funding was received for this study. Dr. Taylor is supported by funding from the Intramural Program, Clinical Center, National Institutes of Health.