Discordant patient and clinician perspectives on the potential value of genetic services in safety-net clinics

Carmit McMullen, Joan Holup, James V. Davis, Perry Foley, Lorie Jacob, Erika Cottrell, David P. Bui, Benjamin Wilfond, Katrina A.B. Goddard

Research output: Contribution to journalArticlepeer-review

Abstract

Purpose. As new genetic services become available, their implementation in safety-net settings must be studied. Methods. We interviewed stakeholders (patients and primary care clinicians) from federally qualified health centers to discuss the utility, acceptability, and priority of new genetic services. We presented scenarios tailored for each audience describing carrier testing, diagnostic testing for a developmental delay, and hereditary cancer syndrome testing. We summarized transcripts using the framework method and compared patient and clinician perspectives. Results. Clinicians questioned the relevance and priority of genetic services. Hereditary cancer testing was perceived most favorably by clinicians, who focused on actionability, cost, and access to downstream care. Patients stated that access to genetic services was important and that there should be parity across safety-net and higher-resourced settings. Conclusions. Genetic services with clear clinical impact are more acceptable to clinicians in safety-net clinics. Clinicians may be underesti-mating patients’ interest in expanded genetic services.

Original languageEnglish (US)
Pages (from-to)1347-1363
Number of pages17
JournalJournal of health care for the poor and underserved
Volume31
Issue number3
StatePublished - Aug 2020
Externally publishedYes

Keywords

  • Carrier screening
  • Developmental delay
  • Disparities
  • Genetic services
  • Hereditary cancer syndromes
  • Safety net

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

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