People with Cerebral Palsy and their Family's Opinion Regarding Genomics Research and International Data Sharing

Author
Wilson Yana
Institution
Cerebral Palsy Alliance Research Institute
Abstract

Introduction: Genomic research in cerebral palsy (CP) will rely upon large-scale international enrollment and data sharing. To understand how people with CP and their families view these studies we conducted an online survey.

Patients and Methods: Participants were recruited via the NSW/ACT CP Register, Reaching for the Stars, Cerebral Palsy Alliance, CP Research Network, and CP Now Foundation/CP Daily Living. Survey responses included yes/no and multiple choices. Chi-squared tests were used to compare groups and explore associations.

Results: 166 individuals participated with a mean age of 42 years (SD, 10y 4mo). 16% were individuals with CP, 87% were females, 65% were Australian residents, and 72% had completed tertiary education. Overall, 66% of respondents were willing to participate in a genomics study. Education (2=4.679, p=0.031, φ=0.181), previous genetic testing (2=4.801, p=0.028, φ=0.197), awareness of genomics (2=4.275, p=0.039, φ=0.186), and trust in the international research community (2=12.847, p=0.002, φ=0.406) were associated with a willingness to participate. Trust was also associated with willingness to biobanking (2=12.972, p=0.002, φ=0.410), and willingness to share deidentified data (2=19.639, p=0.002, φ=0.508).

Conclusion: People with CP and their families are willing to participate in genomics studies; however, these data demonstrate the importance of facilitating trust between the research community and participants.

Attached file
Ref. N.
O7695