Research Venue, Worker Type, and Scientific and Ethical Integrity of Community-Based Research

Background and Purpose: Front-line research workers can be divided into two groups: traditional research assistants (TRAs) and community research workers (CRWs). Both perform the same research tasks, recruitment and data gathering, with the same marginalized research participants, but differ in important respects. TRAs have little in common with the community being studied; CRWs are hired precisely because they share key characteristics, including living in the same neighborhood or having similar socio-cultural, family or personal history with the research problem being studied (e.g., IV drug use, those at high risk of contracting HIV, families with children with physical health or socio-emotional vulnerabilities. These close ties can also result in unacknowledged challenges to the integrity of research data. The primary aim of this study was to explore some of the ethical challenges arising for front-line research workers that might facilitate or impede the responsible conduct of research. Method: To explore these potential strains, we analyzed semi-structured interviews, lasting an average of 1 to 1 ¼ hours, with 46 front-line research staff conducting recruitment and data collection in marginalized communities in a large metropolitan area. Although CRWs were the focus of the study, we included 14 TRAs in our sample to help understand whether or how shared community values might complicate research relationships and affect the responsible conduct of research. Questions related to how they responded to ethical challenges and pressures they faced in doing research as well as their comments on scenarios involving ethical challenges that fictionalized front-line research workers faced. Interviews were audio-recorded, transcribed and imported into Atlas-ti to facilitate analysis. Open coding was performed on a third of the transcripts, a preliminary codebook was developed, coding discrepancies were discussed and resolved at regularly scheduled team meetings, and the remaining transcripts were coded by two members of the research team, using the finalized codebook. Results: TRAs were younger, more likely to be white, had more formal education, and had spent fewer years in their current research position than CRWs. The majority of all research workers were female. Two factors relevant to ethical compliance emerged: worker type (TRA or CRW) and the type of research venue where they work: (1) organizational settings (i.e. academic medical centers, and neighborhood institutions (schools, churches, or community health centers) or 2) streets/participant homes. The further out into the community (and away from organizational settings) and the more closely aligned with the community the research worker was, the greater the: 1) challenges to research integrity, 2) likelihood of not following the protocol and fabricating or falsifying data, 3)challenges in maintaining boundaries with research participants; and 4) threats to personal safety. Conclusions and Implications: Understanding the ethical challenges that different types of front-line research workers may face is key to appreciating why they make certain choices that may compromise the integrity of research data, assist IRBs and PIs understand risk and benefit in community-based research, and support improved ethical training for workers that is consistent with the complex challenges they face.