People with Cerebral Palsy and Their Family’s Preferences about Genomics Research,Public Health Genomics

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People with Cerebral Palsy and Their Family’s Preferences about Genomics Research
Public Health Genomics ( IF 1.3 ) Pub Date : 2021-09-17 , DOI: 10.1159/000518942
Yana Alexandra Wilson _{1,

2} , Sarah McIntyre _{1,

2} , Emma Waight _{1,

2} , Marelle Thornton ₃ , Saskia van Otterloo ₃ , Sophie Rachel Marmont ₃ , Michael Kruer _{4,

5} , Gareth Baynam _{6,

7,

8,

9,

10} , Jozef Gecz _{11,

12,

13} , Nadia Badawi _{1,

2,

14}

Affiliation

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.
CP Quest, Cerebral Palsy Alliance, Sydney, New South Wales, Australia.
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.
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.
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.
Grace Centre for Newborn Care, The Children's Hospital at Westmead, Westmead, New South Wales, Australia.

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.
Public Health Genomics

中文翻译：

脑瘫患者及其家人对基因组学研究的偏好

简介：本研究的目的是了解脑瘫 (CP) 患者及其家人对基因组研究（包括国际数据共享和生物样本库）的态度和偏好。方法：脑瘫患者及其家人被邀请通过电子邮件（NSW/ACT CP Register）或通过脑瘫联盟、CP 研究网络和 CP Now 在社交媒体上发布的帖子参与基于网络的调查。调查回答包括是/否/不确定、多项选择和李克特量表。 Fisher 精确检验和^χ2检验用于评估亚组之间是否存在显着差异。结果：脑瘫患者及其家人 ( n = 145) 愿意参与基因组学研究 (68%)、数据共享 (82%) 和生物样本库工作 (75%)。这种参与意愿与完成高等教育、之前的基因检测经验、整体较高的基因组意识以及对国际研究人员的信任有关。调查受访者还表达了有关样本和数据使用的持续沟通和多样化信息需求。主要问题与隐私和数据安全有关。讨论：基因组研究和 CP 国际数据共享工作的成功取决于广泛的支持和招募。脑瘫患者及其家人的持续咨询和参与将促进信任并提高对脑瘫基因组学的认识，从而最大限度地提高参与者的吸收和招募。
公共卫生基因组学

更新日期：2021-09-17

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