Decision role preferences for return of results from genome sequencing amongst young breast cancer patients

Cindy B. Matsen, Sarah Lyons, Melody S. Goodman, Barbara B. Biesecker, Kimberly A. Kaphingst

Research output: Contribution to journalArticlepeer-review


Objective: To better understand decision role preferences in women diagnosed with breast cancer at a young age for return of results of genome sequencing in research and clinical settings. Methods: Participants were surveyed about communication and decision-making preferences related to genome sequencing results and factors that may affect these preferences. The primary outcome was decision role preference (Control Preference Scale) for selecting what results to receive within medical care or within a research study. Results: For results returned as part of medical care, most patients preferred a collaborative (N = 481, 45%) or active (N = 488, 45%) role with only 107 (10%) choosing a passive role. When making the decision as part of a research study, most patients preferred an active role (N = 617, 57%), 350 (33%) choosing a collaborative role, and110 (10%) choosing a passive role. Conclusion: Most women in this study preferred to share in decision making. Participants had somewhat different role preferences for clinical and research contexts, with greater preference for active roles in the research context. Practice Implications: We advocate for practice guidelines that incorporate discussion of decision role as an integral part of patient centered care and shared decision-making and recognize that more work is needed to inform guidelines.

Original languageEnglish (US)
Pages (from-to)155-161
Number of pages7
JournalPatient Education and Counseling
Issue number1
StatePublished - Jan 2019


  • Advanced genetic testing
  • BRCA
  • Breast cancer
  • Decision making
  • Decision role preferences
  • Genetic knowledge

ASJC Scopus subject areas

  • General Medicine


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