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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.
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