Patients' views on incidental findings from clinical exome sequencing

Kristin E. Clift, Colin M.E. Halverson, Alexander S. Fiksdal, Ashok Kumbamu, Richard R Sharp, Jennifer B. McCormick

Research output: Contribution to journalArticle

53 Scopus citations

Abstract

This article characterizes the opinions of patients and family members of patients undergoing clinical genomic-based testing regarding the return of incidental findings from these tests. Over sixteen months, we conducted 55 in-depth interviews with individuals to explore their preferences regarding which types of results they would like returned to them. Responses indicate a diversity of attitudes toward the return of incidental findings and a diversity of justifications for those attitudes. The majority of participants also described an imperative to include the patient in deciding which results to return rather than having universal, predetermined rules governing results disclosure. The results demonstrate the importance of a patient centered-approach to returning incidental findings.

Original languageEnglish (US)
JournalApplied and Translational Genomics
DOIs
StateAccepted/In press - 2015

Keywords

  • Attitude
  • Clinical genomics
  • ELSI
  • Incidental finding
  • Precision Medicine
  • Qualitative research
  • Return of results

ASJC Scopus subject areas

  • Biotechnology
  • Molecular Biology
  • Pharmaceutical Science

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  • Cite this

    Clift, K. E., Halverson, C. M. E., Fiksdal, A. S., Kumbamu, A., Sharp, R. R., & McCormick, J. B. (Accepted/In press). Patients' views on incidental findings from clinical exome sequencing. Applied and Translational Genomics. https://doi.org/10.1016/j.atg.2015.02.005