Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research. Issue 4 (3rd April 2018)

• Record Type: Journal Article
• Authors: Kraft, Stephanie A.; Cho, Mildred K.; Gillespie, Katherine; Halley, Meghan; Varsava, Nina; Ormond, Kelly E.; Luft, Harold S.; Wilfond, Benjamin S.; Lee, Sandra Soo-Jin
• Is Part Of: American journal of bioethics. Volume 18:Issue 4(2018)
• Page Start: 3
• Page End: 20
• Publication Date: 2018-04-03
• Subjects: genetic research -- research ethics -- informed consent -- precision medicine -- biobank -- electronic medical records; Bioethics -- Periodicals; Medical ethics -- Periodicals; 174.957
• DOI: 10.1080/15265161.2018.1431322
• Languages: English
• ISSNs: 1526-5161

Abstract

Abstract : 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.