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      Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research

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          Abstract

          <p class="first" id="P1">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. </p>

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          Author and article information

          Journal
          The American Journal of Bioethics
          The American Journal of Bioethics
          Informa UK Limited
          1526-5161
          1536-0075
          April 05 2018
          April 03 2018
          April 05 2018
          April 03 2018
          : 18
          : 4
          : 3-20
          Affiliations
          [1 ] Seattle Children's Research Institute
          [2 ] Stanford University
          [3 ] Palo Alto Medical Foundation Research Institute
          Article
          10.1080/15265161.2018.1431322
          6173191
          29621457
          8aac5528-83b2-4815-ae9e-043afaa9d28b
          © 2018
          History

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