Open AccessEngaging community stakeholders in research on best practices for clinical genomic sequencing
Author(s) -
Ida Griesemer,
Brooke S Staley,
Alexandra F. Lightfoot,
Lizzy Bain,
Derrick Byrd,
Carol Conway,
Tracey Grant,
Barbara Leach,
Laura V. Milko,
Lonna Mollison,
Nadiah Porter,
Sharron Reid,
Gerri Smith,
Margaret Waltz,
Jonathan S. Berg,
Christine Rini,
Julianne O’Daniel
Publication year - 2020
Publication title -
personalized medicine
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.489
H-Index - 31
eISSN - 1744-828X
pISSN - 1741-0541
DOI - 10.2217/pme-2020-0074
Subject(s) - context (archaeology) , genomics , community based participatory research , genomic sequencing , community engagement , translational research , best practice , medicine , genetics , genome , public relations , biology , participatory action research , political science , sociology , paleontology , pathology , anthropology , law , gene
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.