What is …?: A Research Ethics Jeopardy™ Game to Help Community Partners Understand Human Subjects Protections and Their Importance

Abstract

Although community partners in participatory research need to understand basic principles of research ethics and human subjects protections, few tools have been designed with these partners in mind. To assist in this process, and help engage youth community partners in learning this critical material, a game was developed based on the popular television program Jeopardy(TM). Piloted with a group of 18 Mexican-American adolescents as part of a broader community-based participatory research(CBPR) project, the game begins with small group study of infamous cases of research ethics violations (eg. the Tuskegee Syphilis Study) and of the human subjects protections that resulted. The participants then play the Jeopardy game in teams, responding to “What is …?” questions concerning the five infamous research studies and corresponding human subjects protections. Although observational findings revealed substantial learning and active engagement in the process, as well as strong retention of the material several months later, the tool requires further evaluation. Based on this pilot experience, however, we believe the Research Ethics Jeopardy^™ Game offers promise in helping youth and other community partners in CBPR master critical information about human subjects protections and their importance in an accessible and lively manner.

One of the most challenging—and important—parts of doing community-based participatory research (CBPR) with youth and other community partners involves adequately and meaningfully engaging them in understanding and participating in processes for the protection of human subjects. Mandates requiring such protections for participants in biomedical and behavioral research were instituted in the United States based in part on recommendations put forward in the 1978 Belmont Report.¹ This report, a response to the egregious victimization of research participants in such infamous cases as the Tuskegee study of untreated syphilis in African American males² emphasized the importance of respect for persons, justice and other ethical principles and their applications in research involving human participants.

While time consuming and often cumbersome,³ human subjects processes are critical, detailing how researchers, including community members of research teams, will work to insure that those who take part in a given study do so willingly with a complete and informed understanding of the nature and potential risks and benefits of their participation.

In CBPR, new tools have been designed to help researchers—and the Institutional Review Boards (IRBs) that evaluate their work—better understand and address the ethical challenges posed in this orientation to research.^4,5 With few exceptions,^4-6 however, such instruments have not been designed by or with community partners in mind—other than those who are being trained for participation as community representatives on IRBs. The dearth of such pedagogical tools is particularly problematic in CBPR and related research, in which community partners increasingly are being asked to undertake human subjects protection training (HSPT). Increasingly, community research partners must obtain Collaborative Institutional Training Initiative (CITI) certification, developed by the National Institutes of Health (NIH) to ensure that all research partners have a clear understanding of the human subjects protections prior to their participation in such research.

We applaud the growing recognition that community-based research partners, like their academically trained researcher counterparts, should have a strong familiarity with the reasons for and content of human subjects protections. A publically available PowerPoint^™ presentation for use in Human Subjects Protections Training (HSPT) with community partners was developed by Professor Eugenia Eng at the University of North Carolina, Chapel Hill and has been used both in North America and globally.⁶ Similarly, many case studies and role plays have been developed to augment community partners’ learning about how and why to obtain informed consent, insure confidentiality and so forth.^7,8 However, the exercises themselves tend not to be published. Finally, and while not specifically designed with community partners in mind, a comprehensive study guide now is available from the Presidential Commission for the Study of Bioethical Issues (2012). The guide looks in detail at a now much reviled...