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

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 re...

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Published inAmerican journal of bioethics Vol. 18; no. 4; pp. 3 - 20
Main 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
Format Journal Article
LanguageEnglish
Published United States Taylor & Francis 03.04.2018
Subjects
biobank
Biological Specimen Banks
Biomedical Research - ethics
Communication
Community-Institutional Relations
Continental Population Groups
Data Collection
electronic medical records
Ethics, Research
Ethnic Groups
Focus Groups
Genetic Research
Humans
Informed Consent
Patient Participation
Patient Selection
Precision Medicine
research ethics
Research Personnel
Residence Characteristics
Respect
Trust
precision medicine
electronic medical records
genetic research
informed consent
research ethics
biobank
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Summary: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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ISSN:1526-5161
1536-0075
DOI:10.1080/15265161.2018.1431322