How Do Street-Level Research Workers Think About the Ethics of Doing Research “On the Ground” With Marginalized Target Populations?

Abstract

Background: Recent research suggests that street-level research workers face ethical issues in the responsible conduct of research that are outside the scope of principal investigators’ experiences and concerns. This is particularly true of community research workers (CRWs), who come to their research work with significant connections to the community being studied. CRWs face additional or different ethical issues compared with traditional research assistants (TRAs), who perform the same kinds of research tasks with similar marginalized populations as CRWs but do not share the same close community ties with research participants. This article presents data from interviews with street-level research workers in a major U.S. metropolitan area, exploring differences and similarities in how CRWs and TRAs conceive of and talk about ethics in research. Methods: In-depth interviews were conducted with street-level research workers, both CRWs and TRAs, who worked for studies on a variety of health issues, including sexually transmitted diseases, drug use, asthma, HIV, and prenatal care, all with underserved, low-income, primarily ethnic or racial minority target populations. Results: From the 46 interviews with participants, four themes emerged from the data: Ethics requires following the protocol, ethics requires tolerating differences among people, ethics requires ensuring informed consent, and ethics requires helping or protecting participants. Discussion of tolerance was much more prominent among CRWs than among TRAs. TRAs showed greater concern about informed consent and avoiding coercion than did CRWs. Although much street-level research is done to address health disparities, the idea that ethics requires treating different groups fairly (justice) was not a prominent theme in either group. The concepts of official ethics and bureaucratic ethics are employed to contextualize front-line research workers’ understandings of ethics on the ground. Conclusion: This study found that TRAs and CRWs had some overlapping but also different ways of understanding what it means to do their research work ethically. TRAs put more emphasis on the values cited by the federal regulations and institutional review boards, such as following the protocol and obtaining proper informed consent. In contrast, CRWs emphasized tolerance and helping community members.

Keywords::

• research ethics
• community-engaged research
• front-line research workers
• bureaucratic ethics
• official ethics
• ethics on the ground
• responsible conduct of research

ACKNOWLEDGMENTS

This article developed from an invited presentation to a seminar at the Ethox Centre, University of Oxford, organized by Patricia Kingori. Special thanks to Jill Fisher for comments on a later draft.

AUTHOR CONTRIBUTIONS

Kenneth A. Richman was the lead author for this article, and was involved in developing and implementing the study. The study was conceived and led by Leslie B. Alexander, who was involved in all aspects of developing this article. Gala True contributed to the design, data collection, and data analysis in the study and contributed to the writing of this article.

Funding

Funded by grant 5RO1 NR9879-2, Research Extenders and Research Integrity: A New Frontier. Leslie B. Alexander, PI. Office of Research Integrity and National Institute of Nursing Research.

CONFLICT OF INTERESTS

The authors report no conflicts of interest relating to this research.

ETHICAL APPROVAL

This study was approved by the institutional review boards at Bryn Mawr College and MCPHS University (formerly the Massachusetts College of Pharmacy and Health Sciences).

Notes

^1. Promotores is one term used for community health workers in the Spanish-speaking population. Community health workers perform health screening, education, and so on. Some community health workers have dual roles, as both service providers and research workers.