Sharing genomic data from clinical testing with researchers: public survey of expectations of clinical genomic data management in Queensland, Australia.

ABSTRACT:

Background

There has been considerable investment and strategic planning to introduce genomic testing into Australia's public health system. As more patients' genomic data is being held by the public health system, there will be increased requests from researchers to access this data. It is important that public policy reflects public expectations for how genomic data that is generated from clinical tests is used. To inform public policy and discussions around genomic data sharing, we sought public opinions on using genomic data contained in medical records for research purposes in the Australian state of Queensland.

Methods

A total of 1494 participants completed an online questionnaire between February and May 2019. Participants were adults living in Australia. The question

SUBMITTER: Vidgen ME 

PROVIDER: S-EPMC7678081 | biostudies-literature | 2020 Nov

REPOSITORIES: biostudies-literature