Proximity, Ethical Dilemmas, and Community Research Workers

Abstract

Background: In community-engaged research (CEnR), recruitment and data collection are often assigned to community research workers (CRWs). CRWs are hired because of close ties with target communities and presumed greater success recruiting and gathering data from marginalized populations. The value conflicts and personal stress facing CRWs have been described in the international context; however, less attention has been paid to these issues in U.S. settings. Methods: Qualitative interviews were held with CRWs about their experiences with CEnR. Interviews were transcribed and coded using Atlas.ti. Results: The data indicate that CRWs working in settings controlled by the participants, such as neighborhood streets and participant homes, are more likely to face conflicts between following the norms of research and meeting what they perceive to be their everyday obligations to help specific others (duties of relational ethics) and to keep themselves safe. This suggests that “physical proximity” (understood as degree of penetration into the physical domain of the target research community) is an important factor in the ethics of actual practice in CEnR. Conclusions: CRWs often experience ethical complexities that are simply not in the realm of experience of most higher level researchers. How CRWs navigate conflicting ethical obligations can affect the quality and usefulness of the data collected and thereby affect communities by influencing policies informed by these data. Soliciting the perspectives of CRWs early in the process of research design and development is recommended to maximize the benefits achievable through CEnR.

Keywords:

• community-engaged research
• data collection and management
• data integrity
• ethics of care
• grounded theory
• marginalized populations
• relational ethics
• research ethics

Acknowledgments

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. This study was approved by the IRBs at Bryn Mawr College and at the Massachusetts College of Pharmacy and Health Sciences. An NIH Certificate of Confidentiality is in effect. The authors are grateful to Kay Armstrong, Patrice Gammon, Diana Harris, Page Buck, and Taalibah Kariem-White for their hard work implementing this project; to Nicolette Nagamatsu for research and editorial support; and to Emily Anderson, Celia B. Fisher, Maghboeba Mosavel, and Ray De Vries for valuable insights in response to earlier drafts.