Research That Matters (January 17 - 20, 2008)

Background and Purpose: This is an NIH funded grant (15R01 NR009879-02) of “Research Extenders” (REs), lay people hired to conduct street-level research in hard-to-reach, primarily minority communities. REs are presumed to have greater access to targeted populations because of shared ethnicity, life experience, or neighborhood. Little attention has been paid to the challenges of including REs on the research team, particularly relating to the ethical conduct of research, human subjects protection, and data integrity. Specific research aims of our study included: 1. exploring the ‘lived experiences' of REs in conducting research; 2. discovering how the worldviews and vernacular of REs compare with normative standards of research ethics and with the views and language of traditional research personnel; and 3. identifying special ethical challenges faced by REs who provide services and conduct research within the same community. Methods: Semi-structured interviews were conducted with a purposive sample of 45 persons involved in community-based research activities: 15 single-role REs (SRREs), 15 dual-role REs (DRREs) and 15 non-RE researchers (NIRs). The interview covered topics such as views on research ethics, experiences with ethical dilemmas, availability of resources to address ethical dilemmas, and sense of identification (if any) with the populations and issues being studied. We also asked respondents to comment on standardized scenarios involving ethical conflicts in order to discern attitudes about normative principles of research ethics, such as respect for persons and data integrity. Targeted quantitative data were also collected. Interviews lasted 1.5-2 hours and were digitally recorded, transcribed, and entered into Atlas-ti software. In keeping with a deductive, Grounded Theory approach, identification of coding themes and theory development were grounded in the language and views of respondents. Results: In our sample, REs were more likely than NIRs to acknowledge that they or their colleagues violated principles of research ethics and they attributed their actions to the pressures of recruitment and enrollment. DRREs were more likely to say they commit ethical violations, such as falsifying data. Compared with NIRs, many REs were disenfranchised from employers and from research in general. Disenfranchisement was a key factor in why some REs knowingly violated research protocols and principles. Racial tensions played a large role in how REs approached their research work; many REs felt that the research being done in minority communities was exploitative, and had doubts about whether it would ultimately benefit the community. REs also spoke about the tensions they experienced working in unsafe neighborhoods and the knowledge that they were being sent to those areas because of their ethnicity. Conclusions and Implications: Our study revealed key factors in why some REs commit ethical violations. These factors include limitations imposed by the way their role is structured within the research protocol and pressures that impact how REs prioritize principles of research ethics. We also identified factors that may act as a buffer to these pressures. Development and implementation of training and interventions targeted to the unique needs of these workers will improve the quality and integrity of research studies that involve REs.