First Do No Harm: Ethical Concerns of Health Researchers That Discourage the Sharing of Results With Research Participants

Abstract

Background: Health researchers and health research participants support the sharing of research results; however, results are typically only shared through peer-reviewed publications. Few studies have investigated researchers’ ethical concerns related to sharing results with research participants. Methods: An explanatory approach was used to explore the ethical concerns researchers may have with returning aggregate results to research participants. Researchers (N = 414) responded to an online survey of open-ended questions that allowed researchers to provide in-depth explanations regarding their responses to closed-ended questions. Results: Across researchers, the mean percentage of studies for which ethical concerns were reported as a barrier to results sharing was 38.5% (SD= 30.7). Researchers’ primary ethical concerns with returning results were articulated as an overarching desire to prevent harm to participants. Three broad ethical concerns emerged, each with underlying subthemes: 1) distress, 2) understanding, and 3) privacy. Conclusions: This is the first study to broadly explore researchers’ ethical concerns with sharing aggregate research results with participants and reveals that researchers’ ethical concerns are closely tied to the ethical obligation to do no harm. In order to increase results sharing, steps must be taken to help researchers understand how to minimize potential harm when sharing results.

Keywords:

• Research dissemination
• research ethics
• results sharing
• health research dissemination
• survey

Author contributions

Rachel S. Purvis directed the study, contributed to study design, collected data, performed qualitative data analysis and interpretation, and drafted and revised article. Christopher R. Long contributed to study design, collected data, performed statistical data analysis and interpretation, and drafted and revised article. Leah R. Eisenberg contributed to data analysis and interpretation and revised the article. D. Micah Hester contributed to data analysis and interpretation and revised the article. Thomas V. Cunningham contributed to data analysis and interpretation and revised the article. Angel Holland contributed to data analysis and interpretation and revised the article. Harish E. Chatrathi contributed to data analysis and interpretation and revised the article. Pearl A. McElfish led all phases of the study, conceptualized the study, contributed to study design, collected data, performed data analysis and interpretation, and reviewed drafts of the article. All authors approve the final version of article.

Conflicts of interest

The authors have no conflict of interests to disclose.

Ethical approval

This study was deemed exempt by the institutional review board(s) at the University of Arkansas for Medical Sciences (#205983).

Additional information

Funding

The project described was supported by the Translational Research Institute (TRI) at the University of Arkansas for Medical Sciences grant 1U54TR001629-01A1 through the National Center for Advancing Translational Sciences of the National Institutes of Health (NIH). The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.