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 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.

Trust and Trade-Offs in Sharing Data for Precision Medicine: A National Survey of Singapore

“…This finding is important for interpreting the prior literature on consent preferences for data sharing. Public attitudes vary greatly on the need for consent [ 12 , 35 ], with some people expecting to consent for each data use [ 9 ], some willing to provide one time (broad) consent [ 36 , 37 , 38 ] and some happy for data to be used without consent [ 19 , 39 ]: two thirds of the participants in our study indicated that they were willing to share de-identified health data with institutions for IRB-approved research without specific consent. It is tempting to attribute the apparent differences between the relative weight given to consent in this study compared with others in Northern America and Europe to cultural norms in Asia that are assumed to place less emphasis on individual liberty and consent.…”

“…Prior research has shown general public reluctance to share data with commercial companies [ 8 , 9 , 46 ], primarily due to concerns about exploitation/profiteering [ 39 , 47 ] and a lack of familiarity [ 48 , 49 ] with intended uses of the data by commercial companies. However, there is limited research that differentiates between different commercial entities with an interest in health data.…”

“…Prior research has shown general public reluctance to share data with commercial companies [8,9,46], primarily due to concerns about exploitation/profiteering [39,47] and a lack of familiarity [48,49] with intended uses of the data by commercial companies.…”

“…International literature on public preferences and attitudes towards health data sharing identifies numerous issues influencing the willingness of people to participate in PM, in particular privacy, risk minimization, data security, control, transparency, accountability, trust and the social value of the research [ 7 ]. The prior research suggests that, when given the option, people would prefer to have greater control over their health data [ 8 , 9 , 10 , 11 , 12 , 13 , 14 ]. However, other studies indicate that people may be willing to accept less control over their health data in exchange for public benefits [ 15 ].…”

Queensland Genomics: an adaptive approach for integrating genomics into a public healthcare system

“…Sixteen Capability projects were commissioned within the Strategy and Legacy Rounds (Table 2 ). Projects focused on (1) preparation of the health system for genomics, or (2) support or evaluation of Clinical projects 27 – 35 . In addition, seven projects designed by the CAG were funded in the Strategy and Legacy Rounds (Table 2 ) that focused on areas of need for the patient community and patient support mechanisms within the health system 36 .…”