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

Autor: Griesemer I; Department of Health Behavior, UNC Chapel Hill, Chapel Hill, NC, USA.; Cecil G. Sheps Center for Health Services Research, UNC Chapel Hill, Chapel Hill NC, USA., Staley BS; Department of Epidemiology, UNC Chapel Hill, Chapel Hill, NC, USA., Lightfoot AF; Department of Health Behavior, UNC Chapel Hill, Chapel Hill, NC, USA.; Center for Health Promotion & Disease Prevention, UNC Chapel Hill, Chapel Hill, NC, USA., Bain L; Parent/Advocate, Knightdale, NC, USA., Byrd D; Parent/Advocate, Family Resource Center South Atlantic, Raleigh, NC, USA., Conway C; Parent/Advocate, Parent Advocates for Adult Children with Intellectual &/or Developmental Disabilities in NC, Chapel Hill, NC, USA., Grant TL; Department of Genetics, UNC Chapel Hill, Chapel Hill, NC, USA., Leach B; Parent/Advocate, Family Support Program, School of Social Work, UNC Chapel Hill, Chapel Hill, NC, USA., Milko L; Department of Genetics, UNC Chapel Hill, Chapel Hill, NC, USA., Mollison L; Department of Genetics, UNC Chapel Hill, Chapel Hill, NC, USA., Porter N; Parent/Advocate, Durham, NC, USA., Reid S; Parent/Advocate, Wake County Sickle Cell Support Group, Raleigh, NC, USA., Smith G; Parent/Advocate, Holly Springs, NC, USA., Waltz M; Department of Social Medicine, UNC Chapel Hill, Chapel Hill, NC, USA., Berg JS; Department of Genetics, UNC Chapel Hill, Chapel Hill, NC, USA., Rini C; Department of Medical Social Sciences, Feinberg School of Medicine & Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Chicago, IL, USA., O'Daniel JM; Department of Genetics, UNC Chapel Hill, Chapel Hill, NC, USA.
Jazyk: angličtina
Zdroj: Personalized medicine [Per Med] 2020 Nov; Vol. 17 (6), pp. 435-444. Date of Electronic Publication: 2020 Oct 07.
DOI: 10.2217/pme-2020-0074
Abstrakt: 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.
Databáze: MEDLINE