Rethinking the ethical principles of genomic medicine services

et al. 2020

Preprint

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 1,233 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.

Section: Discussionmentioning

confidence: 91%

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

et al. 2020

Preprint

Section: Discussionmentioning

confidence: 99%

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

et al. 2020

Preprint

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.

“…Currently, QH does not have any specific policies related to genomic data, thus general health information policies are routinely applied instead. In clinical genetic testing, there has been a debate surrounding the concept of genetic exceptionalism -which proposes that genetic and genomic data have special risks not observed in other types of health information and therefore, needs different considerations in data management and patient consent (25). Participants in a global study (that included Australians) who viewed genomic data as exceptional, were more willing to participate in research than those without genomic exceptionalism views (22), thus indicating that even if QH took a genomic exceptionalism position, people would still participate in research.…”

Section: Discussionmentioning

confidence: 99%

Sharing Genomic Data From Clinical Testing with Researchers: Public Expectations of Clinical Genomic Data Management in Queensland, Australia.

et al. 2020

Preprint

Background:There has beenconsiderable investment and strategic planning to introduce genomic testing intoAustralia’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. However, sharing of genomic data comes with a unique set of ethical, legal and social considerations that are not necessarily reflected in current health information management policies and legislation. 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 1,233 participants completed an online questionnaire between February and May 2019. Results:Most participants wanted to be given the choice to have their genomic data from medical records used in research. Their expectations onhow often they needed to be approached for permission on using their genomic data, depended on whether thedata was identifiable or anonymous. Participants were most concerned with genomics data sharing that could lead to discrimination (insurance and employment), data being used for marketing, data security, orcommercial use.Conclusions:Most participants were willing to share their genomic data from medical records with researchers. However,the existing policies related to this process in Queensland do not reflect public expectations for how this is achieved. Here we present options available to public health service to better reflect public expectations in clinical genomic data management and use.