Australian public perspectives on genomic data governance: responsibility, regulation, and logistical considerations.

ABSTRACT: Genomic sequencing generates huge volumes of data, which may be collected or donated to form large genomic databases. Such information can be stored for future use, either for the data donor themselves or by researchers to help improve our understanding of the genetic basis of disease. Creating datasets of this magnitude and diversity is only possible if patients, their families, and members of the public worldwide share their data. However, there is no consensus on the best technical approach to data sharing that also minimises risks to individuals and exploration of stakeholders' views on aspects of genomic data governance models-the ways genomic data is stored, managed, shared and used-has been minimal. To address this need, we conducted focus groups with 39 members of the Australian pu

SUBMITTER: Lynch F 

PROVIDER: S-EPMC10923910 | biostudies-literature | 2024 Mar

REPOSITORIES: biostudies-literature