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

摘要

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.