Engaging community stakeholders in research on best practices for clinical genomic sequencing

Ida Griesemer*, Brooke S. Staley, Alexandra F. Lightfoot, Lizzy Bain, Derrick Byrd, Carol Conway, Tracey L. Grant, Barbara Leach, Laura Milko, Lonna Mollison, Nadiah Porter, Sharron Reid, Gerri Smith, Margaret Waltz, Jonathan S. Berg, Christine Rini, Julianne M. O'Daniel

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

8 Scopus citations

Abstract

Aim: Maximizing the utility and equity of genomic sequencing integration in clinical care requires engaging patients, their families, and communities. The NCGENES 2 study explores the impact of engagement between clinicians and caregivers of children with undiagnosed conditions in the context of a diagnostic genomic sequencing study. Methods: A Community Consult Team (CCT) of diverse parents and advocates for children with genetic and/or neurodevelopmental conditions was formed. Results: Early and consistent engagement with the CCT resulted in adaptations to study protocol and materials relevant to this unique study population. Discussion: This study demonstrates valuable contributions of community stakeholders to inform the implementation of translational genomics research for diverse participants.

Original languageEnglish (US)
Pages (from-to)435-444
Number of pages10
JournalPersonalized Medicine
Volume17
Issue number6
DOIs
StatePublished - Nov 2020

Keywords

  • clinical trial
  • community engagement
  • community-academic partnerships
  • diagnostic odyssey
  • genetics
  • genomic sequencing
  • health equity
  • health services research
  • precision medicine
  • underserved populations

ASJC Scopus subject areas

  • Molecular Medicine
  • Pharmacology

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