Sharing Genomic Data From Clinical Testing with Researchers: Public Expectations of Clinical Genomic Data Management in Queensland, Australia.

Abstract

Background:There has beenconsiderable investment and strategic planning to introduce genomic testing intoAustralia’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. However, sharing of genomic data comes with a unique set of ethical, legal and social considerations that are not necessarily reflected in current health information management policies and legislation. 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 1,233 participants completed an online questionnaire between February and May 2019. Results:Most participants wanted to be given the choice to have their genomic data from medical records used in research. Their expectations onhow often they needed to be approached for permission on using their genomic data, depended on whether thedata was identifiable or anonymous. Participants were most concerned with genomics data sharing that could lead to discrimination (insurance and employment), data being used for marketing, data security, orcommercial use.Conclusions:Most participants were willing to share their genomic data from medical records with researchers. However,the existing policies related to this process in Queensland do not reflect public expectations for how this is achieved. Here we present options available to public health service to better reflect public expectations in clinical genomic data management and use.