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

Yana Alexandra Wilson^{1

2}, Sarah McIntyre^{1

2}, Emma Waight^{1

2}, Marelle Thornton³, Saskia van Otterloo³, Sophie Rachel Marmont³, Michael Kruer^{4

5}, Gareth Baynam^{6

7

8

9

10}, Jozef Gecz^{11

12

13}, Nadia Badawi^{1

2

14}

Affiliations

¹ Discipline of Child and Adolescent Health, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia.
² Cerebral Palsy Alliance, Sydney, New South Wales, Australia.
³ CP Quest, Cerebral Palsy Alliance, Sydney, New South Wales, Australia.
⁴ Pediatric Movement Disorders Program, Barrow Neurological Institute, Phoenix Children's Hospital, Phoenix, Arizona, USA.
⁵ Departments of Child Health, Neurology, Cellular & Molecular Medicine and Program in Genetics, University of Arizona College of Medicine, Phoenix, Arizona, USA.
⁶ Office of Population Health Genomics, Public Health Division, Department of Health, Government of Western Australia, Perth, Washington, Australia.
⁷ School of Paediatrics and Child Health, University of Western Australia, Perth, Washington, Australia.
⁸ Institute for Immunology and Infectious Diseases, Murdoch University, Perth, Washington, Australia.
⁹ Telethon Kids Institute, University of Western Australia, Perth, Washington, Australia.
¹⁰ Spatial Sciences, Department of Science and Engineering, Curtin University, Perth, Washington, Australia.
¹¹ Robinson Research Institute, The University of Adelaide, Adelaide, South Australia, Australia.
¹² Adelaide Medical School, The University of Adelaide, Adelaide, South Australia, Australia.
¹³ South Australian Health and Medical Sciences Institute, Adelaide, South Australia, Australia.
¹⁴ Grace Centre for Newborn Care, The Children's Hospital at Westmead, Westmead, New South Wales, Australia.

PMID: 34537775
DOI: 10.1159/000518942

Free article

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

Yana Alexandra Wilson et al. Public Health Genomics. 2021.

Free article

. 2021 Sep 17:1-10.

doi: 10.1159/000518942. Online ahead of print.

Authors

Affiliations

¹ Discipline of Child and Adolescent Health, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia.
² Cerebral Palsy Alliance, Sydney, New South Wales, Australia.
³ CP Quest, Cerebral Palsy Alliance, Sydney, New South Wales, Australia.
⁴ Pediatric Movement Disorders Program, Barrow Neurological Institute, Phoenix Children's Hospital, Phoenix, Arizona, USA.
⁵ Departments of Child Health, Neurology, Cellular & Molecular Medicine and Program in Genetics, University of Arizona College of Medicine, Phoenix, Arizona, USA.
⁶ Office of Population Health Genomics, Public Health Division, Department of Health, Government of Western Australia, Perth, Washington, Australia.
⁷ School of Paediatrics and Child Health, University of Western Australia, Perth, Washington, Australia.
⁸ Institute for Immunology and Infectious Diseases, Murdoch University, Perth, Washington, Australia.
⁹ Telethon Kids Institute, University of Western Australia, Perth, Washington, Australia.
¹⁰ Spatial Sciences, Department of Science and Engineering, Curtin University, Perth, Washington, Australia.
¹¹ Robinson Research Institute, The University of Adelaide, Adelaide, South Australia, Australia.
¹² Adelaide Medical School, The University of Adelaide, Adelaide, South Australia, Australia.
¹³ South Australian Health and Medical Sciences Institute, Adelaide, South Australia, Australia.
¹⁴ Grace Centre for Newborn Care, The Children's Hospital at Westmead, Westmead, New South Wales, Australia.

PMID: 34537775
DOI: 10.1159/000518942

Abstract

Introduction: 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.

Methods: 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.

Results: 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.

Discussion: 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.

Keywords: Biobanking; Cerebral palsy; Data sharing; Genome research; Participant perspectives.

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

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

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