People with Cerebral Palsy and Their Family's Preferences about Genomics Research.

Biobanking Cerebral palsy Data sharing Genome research Participant perspectives

Journal

Public health genomics
ISSN: 1662-8063
Titre abrégé: Public Health Genomics
Pays: Switzerland
ID NLM: 101474167

Informations de publication

Date de publication:
17 Sep 2021
Historique:
received: 15 09 2020
accepted: 26 07 2021
pubmed: 20 9 2021
medline: 20 9 2021
entrez: 19 9 2021
Statut: aheadofprint

Résumé

The goal of this study was to understand individuals with cerebral palsy (CP) and their family's attitudes and preferences to genomic research, including international data sharing and biobanking. Individuals with CP and their family members were invited to participate in the web-based survey via email (NSW/ACT CP Register) or via posts on social media by Cerebral Palsy Alliance, CP Research Network, and CP Now. Survey responses included yes/no/unsure, multiple choices, and Likert scales. Fisher's exact and χ2 tests were used to assess if there were significant differences between subgroups. Individuals with CP and their families (n = 145) were willing to participate in genomics research (68%), data sharing (82%), and biobanking efforts (75%). This willingness to participate was associated with completion of tertiary education, previous genetic testing experience, overall higher genomic awareness, and trust in international researchers. The survey respondents also expressed ongoing communication and diverse information needs regarding the use of their samples and data. Major concerns were associated with privacy and data security. The success of genomic research and international data sharing efforts in CP are contingent upon broad support and recruitment. Ongoing consultation and engagement of individuals with CP and their families will facilitate trust and promote increased awareness of genomics in CP that may in turn maximize participant uptake and recruitment.

Identifiants

DOI: 10.1159/000518942 PMID: 34537775
pubmed: 34537775
pii: 000518942
doi: 10.1159/000518942
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

1-10

Informations de copyright

© 2021 The Author(s) Published by S. Karger AG, Basel.

Auteurs

Yana Alexandra Wilson (YA)

Discipline of Child and Adolescent Health, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia.
Cerebral Palsy Alliance, Sydney, New South Wales, Australia.

Sarah McIntyre (S)

Discipline of Child and Adolescent Health, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia.
Cerebral Palsy Alliance, Sydney, New South Wales, Australia.

Emma Waight (E)

Discipline of Child and Adolescent Health, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia.
Cerebral Palsy Alliance, Sydney, New South Wales, Australia.

Marelle Thornton (M)

CP Quest, Cerebral Palsy Alliance, Sydney, New South Wales, Australia.

Saskia van Otterloo (S)

CP Quest, Cerebral Palsy Alliance, Sydney, New South Wales, Australia.

Sophie Rachel Marmont (SR)

CP Quest, Cerebral Palsy Alliance, Sydney, New South Wales, Australia.

Michael Kruer (M)

Pediatric Movement Disorders Program, Barrow Neurological Institute, Phoenix Children's Hospital, Phoenix, Arizona, USA.
Departments of Child Health, Neurology, Cellular & Molecular Medicine and Program in Genetics, University of Arizona College of Medicine, Phoenix, Arizona, USA.

Gareth Baynam (G)

Office of Population Health Genomics, Public Health Division, Department of Health, Government of Western Australia, Perth, Washington, Australia.
School of Paediatrics and Child Health, University of Western Australia, Perth, Washington, Australia.
Institute for Immunology and Infectious Diseases, Murdoch University, Perth, Washington, Australia.
Telethon Kids Institute, University of Western Australia, Perth, Washington, Australia.
Spatial Sciences, Department of Science and Engineering, Curtin University, Perth, Washington, Australia.

Jozef Gecz (J)

Robinson Research Institute, The University of Adelaide, Adelaide, South Australia, Australia.
Adelaide Medical School, The University of Adelaide, Adelaide, South Australia, Australia.
South Australian Health and Medical Sciences Institute, Adelaide, South Australia, Australia.

Nadia Badawi (N)

Discipline of Child and Adolescent Health, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia.
Cerebral Palsy Alliance, Sydney, New South Wales, Australia.
Grace Centre for Newborn Care, The Children's Hospital at Westmead, Westmead, New South Wales, Australia.

Classifications MeSH