How, who, and when: Preferences for delivery of genome sequencing results among women diagnosed with breast cancer at a young age

Kimberly A. Kaphingst, Jennifer Ivanovich, Ashley Elrick, Rebecca Dresser, Cindy Matsen, Melody Goodman

Research output: Contribution to journalArticle

Abstract

Background The increasing use of genome sequencing with patients raises a critical communication challenge: return of secondary findings. While the issue of what sequencing results should be returned to patients has been examined, much less attention has been paid to developing strategies to return these results in ways that meet patients’ needs and preferences. To address this, we investigated delivery preferences (i.e., who, how, when) for individual genome sequencing results among women diagnosed with breast cancer at age 40 or younger. Methods We conducted 60 semistructured, in-person individual interviews to examine preferences for the return of different types of genome sequencing results and the reasons underlying these preferences. Two coders independently coded interview transcripts; analysis was conducted using NVivo 10. Results The major findings from the study were that: (1) many participants wanted sequencing results as soon as possible, even at the time of breast cancer diagnosis; (2) participants wanted an opportunity for an in-person discussion of results; and (3) they put less emphasis on the type of person delivering results than on the knowledge and communicative skills of that person. Participants also emphasized the importance of a results return process tailored to a patient’s individual circumstances and one that she has a voice in determining. Conclusions A critical goal for future transdisciplinary research including clinicians, patients, and communication researchers may be to develop decision-making processes to help patients make decisions about how they would like various sequencing results returned.

Original languageEnglish (US)
Pages (from-to)684-695
Number of pages12
JournalMolecular Genetics and Genomic Medicine
Volume4
Issue number6
DOIs
StatePublished - Nov 1 2016

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Genome
Breast Neoplasms
Communication
Interviews
Patient Preference
Decision Making
Research Personnel
Research

Keywords

  • Breast cancer
  • Genome sequencing
  • Patient preferences
  • Return of results
  • Secondary findings

ASJC Scopus subject areas

  • Molecular Biology
  • Genetics
  • Genetics(clinical)

Cite this

How, who, and when : Preferences for delivery of genome sequencing results among women diagnosed with breast cancer at a young age. / Kaphingst, Kimberly A.; Ivanovich, Jennifer; Elrick, Ashley; Dresser, Rebecca; Matsen, Cindy; Goodman, Melody.

In: Molecular Genetics and Genomic Medicine, Vol. 4, No. 6, 01.11.2016, p. 684-695.

Research output: Contribution to journalArticle

Kaphingst, Kimberly A. ; Ivanovich, Jennifer ; Elrick, Ashley ; Dresser, Rebecca ; Matsen, Cindy ; Goodman, Melody. / How, who, and when : Preferences for delivery of genome sequencing results among women diagnosed with breast cancer at a young age. In: Molecular Genetics and Genomic Medicine. 2016 ; Vol. 4, No. 6. pp. 684-695.
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