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

Am J Bioeth. 2018 Apr;18(4):3-20. doi: 10.1080/15265161.2018.1431322.

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.

Keywords: biobank; electronic medical records; genetic research; informed consent; precision medicine; research ethics.

MeSH terms

  • Biological Specimen Banks*
  • Biomedical Research* / ethics
  • Communication
  • Community-Institutional Relations*
  • Continental Population Groups
  • Data Collection*
  • Ethics, Research
  • Ethnic Groups
  • Focus Groups
  • Genetic Research
  • Humans
  • Informed Consent
  • Patient Participation
  • Patient Selection*
  • Precision Medicine*
  • Research Personnel
  • Residence Characteristics
  • Respect
  • Trust*