Article Text

Download PDFPDF
‘Who is going to put their life on the line for a dollar? That’s crazy’: community perspectives of financial compensation in clinical research
  1. Amie Devlin1,2,
  2. Kirsten Brownstein1,
  3. Jennifer Goodwin1,
  4. Emily Gibeau1,
  5. Mariana Pardes1,
  6. Heidi Grunwald1,
  7. Susan Fisher1
  1. 1Department of Clinical Sciences, Temple University School of Medicine, Philadelphia, Pennsylvania, USA
  2. 2Urban Health Collaborative, Drexel University School of Public Health, Philadelphia, Pennsylvania, USA
  1. Correspondence to Amie Devlin, Temple University School of Medicine, Philadelphia, PA 19122, USA; amie.devlin{at}drexel.edu

Abstract

Background Financial compensation of research participants has been standard practice for centuries, however, there is an ongoing debate among researchers and ethicists regarding the ethical nature of this practice. While these debates develop ethical arguments and theories, they fail to incorporate input from those most affected by financial compensation: potential research participants.

Methods To identify attitudes surrounding clinical research, participants of a long-standing cohort completed a one-time interview. Open-ended questions stimulated a participant-driven discussion surrounding medical research. Following a grounded theory methodology, 58 semistructured interview transcripts were coded, focusing on attitudes surrounding financial compensation of research participants.

Results Of the interviews coded, the majority of participants identified as Black/African American (n=44) and were women (n=40). Five major themes emerged. In support of financial compensation, participants felt that study participants should be compensated for time, effort and risk. However, participants were concerned that compensation may differentially impact low-income populations and entice them to hide potentially harmful side effects. Participants also mentioned that financial compensation may invalidate study results if participants knowingly provide false information to subvert inclusion/exclusion criteria.

Conclusion The emergence of both positive and negative themes reiterates the complicated issue of providing financial compensation for study participation. While compensation as a motivator for research participation raises ethical concerns, participants discussed weighing the benefits with the risks in order to make an informed decision. To avoid paternalistic behaviours, research staff must allow potential research participants to review the available information and make the decision that best reflects their wishes.

  • clinical trials
  • ethics
  • research ethics

Statistics from Altmetric.com

Footnotes

  • Contributors AD designed data collection tools, monitored and participated in data collection, created and oversaw the coding strategy, analysed the results and drafted/revised the paper. She is the guarantor. KB assisted the coding process and helped revise the paper. JG participated in data collection, assisted with the coding process and reviewed the paper. EG and MP helped design data collection tools, assisted with data collection and reviewed the paper. HG provided qualitative oversight for the project and helped revise the paper. SF oversaw all aspects of the study, obtained funding and helped revise the paper.

  • Funding This work was supported by the Temple University Strategic Initiative (no grant number) and the Commonwealth of Pennsylvania, Department of Health (SAP#4100068727).

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Ethics approval The interview guide and other study documents were reviewed/approved by the Temple University Institutional Review Board.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement Data are available upon request.

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.

Other content recommended for you