Dataset Information

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.

SUBMITTER: Vidgen ME

PROVIDER: S-EPMC7678081 | biostudies-literature | 2020 Nov

REPOSITORIES: biostudies-literature

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Sharing genomic data from clinical testing with researchers: public survey of expectations of clinical genomic data management in Queensland, Australia.

Vidgen Miranda E ME Kaladharan Sid S Malacova Eva E Hurst Cameron C Waddell Nicola N

BMC medical ethics 20201119 1

<h4>Background</h4>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 so ...[more]

PMID: 33213438

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Project description:ObjectiveTo investigate public willingness to share sensitive health information for research, health policy and clinical practice.MethodsA total of 1,003 Australian respondents answered an online, attribute-driven, survey in which participants were asked to accept or reject hypothetical choice sets based on a willingness to share their health data for research and frontline-medical support as part of an integrated health system. The survey consisted of 5 attributes: Stakeholder access for analysis (Analysing group); Type of information collected; Purpose of data collection; Information governance; and Anticipated benefit; the results of which were analysed using logistic regression.ResultsWhen asked about their preference for sharing their health data, respondents had no preference between data collection for the purposes of clinical practice, health policy or research, with a slight preference for having government organisations manage, govern and curate the integrated datasets from which the analysis was being conducted. The least preferred option was for personal health records to be integrated with insurance records or for their data collected by privately owned corporate organisations. Individuals preferred their data to be analysed by a public healthcare provider or government staff and expressed a dislike for any private company involvement.ConclusionsThe findings from this study suggest that Australian consumers prefer to share their health data when there is government oversight, and have concerns about sharing their anonymised health data for clinical practice, health policy or research purposes unless clarity is provided pertaining to its intended purpose, limitations of use and restrictions to access. Similar findings have been observed in the limited set of existing international studies utilising a stated preference approach. Evident from this study, and supported by national and international research, is that the establishment and preservation of a social license for data linkage in health research will require routine public engagement as a result of continuously evolving technological advancements and fluctuating risk tolerance. Without more work to understand and address stakeholder concerns, consumers risk being reluctant to participate in data-sharing and linkage programmes.

Project description:BackgroundGlobal action to reduce obesity prevalence requires digital transformation of the public health sector to enable precision public health (PPH). Useable data for PPH of obesity is yet to be identified, collated and appraised and there is currently no accepted approach to creating this single source of truth. This scoping review aims to address this globally generic problem by using the State of Queensland (Australia) (population > 5 million) as a use case to determine (1) availability of primary data sources usable for PPH for obesity (2) quality of identified sources (3) general implications for public health policymakers.MethodsThe Preferred Reporting Items for Systematic Review and Meta-Analyses extension for scoping reviews (PRISMA-ScR) was followed. Unique search strategies were implemented for 'designed' (e.g. surveys) and 'organic' (e.g. electronic health records) data sources. Only primary sources of data (with stratification to Queensland) with evidence-based determinants of obesity were included. Primary data source type, availability, sample size, frequency of collection and coverage of determinants of obesity were extracted and curated into an evidence map. Data source quality was qualitatively assessed.ResultsWe identified 38 primary sources of preventive data for obesity: 33 designed and 5 organic. Most designed sources were survey (n 20) or administrative (n 10) sources and publicly available but generally were not contemporaneous (> 2 years old) and had small sample sizes (10-100 k) relative to organic sources (> 1 M). Organic sources were identified as the electronic medical record (ieMR), wearables, environmental (Google Maps, Crime Map) and billing/claims. Data on social, biomedical and behavioural determinants of obesity typically co-occurred across sources. Environmental and commercial data was sparse and interpreted as low quality. One organic source (ieMR) was highly contemporaneous (routinely updated), had a large sample size (5 M) and represented all determinants of obesity but is not currently used for public health decision-making in Queensland.ConclusionsThis review provides a (1) comprehensive data map for PPH for obesity in Queensland and (2) globally translatable framework to identify, collate and appraise primary data sources to advance PPH for obesity and other noncommunicable diseases. Significant challenges must be addressed to achieve PPH, including: using designed and organic data harmoniously, digital infrastructure for high-quality organic data, and the ethical and social implications of using consumer-centred health data to improve public health.

Dataset Information

Sharing genomic data from clinical testing with researchers: public survey of expectations of clinical genomic data management in Queensland, Australia.

Publications

Sharing genomic data from clinical testing with researchers: public survey of expectations of clinical genomic data management in Queensland, Australia.

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