22- Ethical challenges of community-based organizations engaged in community-led research: a case study to inform future genomics and big health data research

Background: Community-based organizations (CBOs) are key to community-centered research in genomics. CBOs face ethical issues spanning the research practices of community research workers to organizational-level decisions such as whether or not to partner with academic researchers. Despite the availability of research ethics curriculum for community partners and recognition of power dynamics and ethical challenges in community-partnered research, unregulated community-led research conducted by CBOs, either in the absence or limited role of academic partners, may present more nuanced ethical challenges.

Methods: A case series of community-led research efforts at the Korean Community Service Center of Seattle (a Learning Community Based Organization) is presented to explore ethical issues facing CBOs, the potential role of organizational and communitarian ethics, and relevance to big data and genomics-related research.

Results: A broad range of complex ethical issues are observed such as balancing the competing interests of the whole community (e.g., group benefits and harms) with those of individuals/segments; how trust relationships with community members can seemingly obviate community engagement; differing perspectives on the value of research; and the risk of reproducing colonizing research methods can contribute to decisional conflict within CBOs. Organizational ethics yields insights to how CBOs’ values can ground and guide research-related decisions and support resolution of ethical dilemmas. Communitarian ethics provides insights to support collective decision-making about research-related challenges.

Discussion:
Findings of this analysis provide handholds for engaging with CBOs, especially leadership, in practical efforts to address ethical challenges confronted when conducting unregulated research.