Am J Bioeth. 2018 Apr;18(4):3-20. doi: 10.1080/15265161.2018.1431322.
Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research.
Kraft SA1, Cho MK2, Gillespie K3, Halley M3, Varsava N2, Ormond KE2, Luft HS3, Wilfond BS1, Soo-Jin Lee S2.
With the growth of precision medicine research on health data and biospecimens, research institutions will need to build and maintain long-term, trusting relationships with patient-participants. While trust is important for all research relationships, the longitudinal nature of precision medicine research raises particular challenges for facilitating trust when the specifics of future studies are unknown. Based on focus groups with racially and ethnically diverse patients, we describe several factors that influence patient trust and potential institutional approaches to building trustworthiness. Drawing on these findings, we suggest several considerations for research institutions seeking to cultivate long-term, trusting relationships with patients: (1) Address the role of history and experience on trust, (2) engage concerns about potential group harm, (3) address cultural values and communication barriers, and (4) integrate patient values and expectations into oversight and governance structures.
biobank; electronic medical records; genetic research; informed consent; precision medicine; research ethics