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. 2022 Jul 22:13:892475.
doi: 10.3389/fgene.2022.892475. eCollection 2022.

Community input in a genomic health implementation program: Perspectives of a community advisory group

Miranda E Vidgen  1 , Katrina Cutler  2   3 , Jessica Bean  4 , David Bunker  2   3   4 , Lindsay F Fowles  4   5 , Louise Healy  4 , Gary Hondow  4 , Satrio Nindyo Istiko  4 , Aideen M McInerney-Leo  4   6 , Gregory Pratt  1   4 , Deborah Robins  4 , Nicola Waddell  1   4 , Erin Evans  4   7
Affiliations

Community input in a genomic health implementation program: Perspectives of a community advisory group

Miranda E Vidgen et al. Front Genet. .

Abstract

Consumer and community engagement (CCE) in the implementation of genomics into health services and associated research is needed to ensure that changes benefit the affected patients. Queensland Genomics was a program to implement genomics into a public health service. We describe its Community Advisory Group's (CAG) structure and function and provide recommendations based on the CAG members' perspectives. The CAG provided advice to the Queensland Genomics program and its projects in an advisory capacity. The CAG was also resourced to develop and lead community-focused activities. Key enablers for CAG included; diversity of CAG members' skills and experience, adequate resourcing, and the CAG's ability to self-determine their direction. The CAG experienced limitations due to a lack of mechanisms to implement CCE in the Program's projects. Here, we provide insights and commentary on this CAG, which will be useful for other initiatives seeking to undertake CCE in genomic research and health care.

Keywords: community advisory boards; community and consumer engagement; community and consumer involvement; emerging technologies; genetics; genomic; health implementation science; public participation.

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Conflict of interest statement

NW is a founder and shareholder of genomiQa Pty Ltd. and a member of its Board. DB is the Chair of InGeNA. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Figures

FIGURE 1
FIGURE 1
Community Advisory Group members’ characteristics and experience.
FIGURE 2
FIGURE 2
Summary and timeline of Community Advisory Group activities. * Research activities resulting in publication (Wallingford et al., 2020; Vidgen et al., 2022; Wallingford et al., 2022). ‡ Some projects were consulted multiple times.
See this image and copyright information in PMC

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