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 1,494 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.

Public preferences towards data management and governance in Swiss biobanks: results from a nationwide survey

“…They expressed the least trust in pharmaceutical companies, global for-profit companies and health insurance companies. Other studies assessing public opinions globally26 and in the UK, USA, Australia, Canada and Singapore2 27–32 confirm that individuals distinguish between research conducted by public and private actors. Our study identified a further distinction regarding for-profit companies: strong trust in Swiss for-profit companies increased willingness to participate in personalised health research, whereas trust in international for-profit companies had no influence.…”

“…Large amounts of health data and samples are necessary to achieve the goals of personalised medicine, requiring that individuals participate in biomedical research by donating their health data and samples, and that the samples and data be available for reuse in future research studies 1. Studies have shown that public preferences around sharing personal health and genetic information in a research setting vary depending on societal, demographic and jurisdictional context 2. In Switzerland, we previously found that the public generally holds a positive opinion towards personalised health research, and that a majority are hypothetically willing to donate data and samples for such projects 3.…”

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][28][29][30][31][32][33][34][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 .…”

Australian human research ethics committee members’ confidence in reviewing genomic research applications

“…With the growing integration of genomics into clinical AQ1 AQ2 AQ3 AQ4 AQ5 medicine [ 1 ], the scale, scope and complexity of genomic research is inevitably increasing [ 2 ]. There are many ethical considerations associated with genomic research, including the nature of consent [ 3,4,5,6 ], procedures around the disclosure/non-disclosure of results [ 7,8,9,10,11 ], sample ownership and data storage/sharing [ 12,13,14,15 ], the shared nature of genetic information [ 16 ], and genetic discrimination with insurance policies [ 17,18,19 ]. Genomic research, therefore, requires robust ethical review.…”