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.
| Original language | English |
|---|---|
| Article number | 119 |
| Pages (from-to) | 1-11 |
| Number of pages | 11 |
| Journal | BMC Medical Ethics |
| Volume | 21 |
| Issue number | 1 |
| DOIs | |
| Publication status | Published - Dec 2020 |
| Externally published | Yes |
Bibliographical note
Funding Information:The authors would like to thank the QGHA Community Advisory Group, QGHA Ethical Social and Legal Implication program team, Medical Genomics and Genome Informatics labs at QIMR Berghofer, Matilda Haas and the Australian Genomics Health Alliance. Recruitment material and social media promotions were supported by QIMR Berghofer’s External Relations team.
Publisher Copyright:
© 2020, The Author(s).
