Sharing genomic data from clinical testing with researchers: public survey of expectations of clinical genomic data mana
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RESEARCH ARTICLE
Open Access
Sharing genomic data from clinical testing with researchers: public survey of expectations of clinical genomic data management in Queensland, Australia Miranda E. Vidgen1* , Sid Kaladharan1, Eva Malacova1,2,3, Cameron Hurst1 and Nicola Waddell1
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 questionnaire explored participant preferences for sharing genomic data or biological samples with researchers, and concerns about genomic data sharing. Results: Most participants wanted to be given the choice to have their genomic data from medical records used in research. Their expectations on whether and how often they needed to be approached for permission on using their genomic data, depended on whether the data was identifiable or anonymous. Their willingness to sharing data for research purposes depended on the type of information being shared, what type of research would be undertaken and who would be doing the research. Participants were most concerned with genomics data sharing that could lead to discrimination (insurance and employment), data being used for marketing, data security, or commercial use. Conclusions: Most participants were willing to share their genomic data from medical records with researchers, as long as permission for use was sought. However, the existing policies related to this process in Queensland do not reflect participant expectations for how this is achieved, particularly with anonymous genomics data. This inconsistency may be addressed by process changes, such as inclusion of research in addition to clinical consent or general research data consent programs. Keywords: Genomic, Public views, Health information, Data sharing, Secondary use, Data linkage
*Correspondence: [email protected] 1 QIMR Berghofer Medical Research Institute, 300 Herston Road, Herston, QLD 4006, Australia Full list of author information is available at the end of the article
Background Australia is in the midst of a surge in public investment in clinical genomics through programs that focus on accelerated health service implementation and funding for translational research [1]. In 2016, the Queensland State government committed $25 million to the accelerated implementation of genomics into public healthcare [2].
© The Author(s) 2020. Ope
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