Enrolling Genomics Research Participants through a Clinical Setting: the Impact of Existing Clinical Relationships on Informed Consent and Expectations for Return of Research Results

Courtney Berrios, Cynthia A. James, Karen Raraigh, Juli Bollinger, Brittney Murray, Crystal Tichnell, Carolyn D. Applegate, Amanda L. Bergner

Research output: Contribution to journalArticle

Abstract

Genetic counselors working in a clinical setting may find themselves recruiting, enrolling, and returning results for genomic research, and existing clinical relationships with study participants may impact these research interactions. We present a qualitative study using semi-structured interviews of participants enrolled in a genome sequencing/exome sequencing (GS/ES) study at the same institution where they receive clinical care. Interviews were coded for motivations to participate and expectations of this research. The interviews revealed common motivations for participation, including altruism and hope for benefit for themselves, family members, and/or others with their condition. Additionally, themes emerged related to unintentional influence based on trust of the clinical provider that recruited them to the study. Participant trust in the enrolling provider at times appeared to extend to the study team to decide which research results to return and to do so in an appropriate format. Participants also based expectations for research results return on previous clinical genetic testing experiences, which may or may not be realistic depending on study design. It is imperative that genetic counselors enrolling patients into research studies be aware of the potential influence of their clinical relationship on potential subjects, be transparent about their role on the study team, and help set expectations about the study process, including results return.

Original languageEnglish (US)
Pages (from-to)263-273
Number of pages11
JournalJournal of Genetic Counseling
Volume27
Issue number1
DOIs
StatePublished - Feb 1 2018

Keywords

  • Expectations
  • Genetic counseling
  • Genomics research
  • Influence of provider
  • Motivations
  • Return of results

ASJC Scopus subject areas

  • Genetics(clinical)

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