The Need to Track Payment Incentives to Participate in HIV Research

• Published in: IRB Vol. 40; no. 4; pp. 8 - 12
• Main Authors: Brown, Brandon, Galea, Jerome T., Dubé, Karine, Davidson, Peter, Khoshnood, Kaveh, Holtzman, Lisa, Marc, Logan, Taylor, Jeff
• Format: Journal Article
• Language: English
• Published: United States The Hastings Center 01.07.2018
• Subjects: Clinical trials; Ethics Committees, Research; Ethics, Research; Financing, Personal; HIV; Humans; Medical research; Monetary incentives; Motivation; Patient Participation; Research Subjects; payment to participate; undue inducement; research incentives; HIV research; human subjects research; institutional review boards
• ISSN: 0193-7758; 2578-2355; 2326-2222; 2578-2363
• DOI: 10.1002/eahr.404002

Providing incentives is an accepted and common practice in human subjects research, including clinical HIV research. While we know that financial incentives among similar studies can greatly vary, surprisingly little research exists on how to determine when such incentives are excessive or constitute an "undue inducement." Multiple factors, such as risks and benefits, study procedures, study budget, historical precedent, recommendations from institutional review boards, advice from other investigators, and local regulations may influence decisions about appropriate incentives, but little empirical data exist about what incentives are offered to potential research participants. Rules for acceptable gifts, services, and compensation should consider study location and population, but without a clearer understanding of currently offered incentives and how these practices match up to ethical beliefs of appropriateness, we continue to follow perceived trends without critical assessment. Here, we present one potential approach to explore the impact of financial incentives on biomedical HIV research and to further clarify undue inducement: the development of a framework to support ethical decision-making about payment to participate. This framework is based on input from people living with HIV, biomedical HIV researchers, ethicists, former study participants, and IRB members and includes a database that allows for tracking payment practices.