Abstract
Genomic sequencing generates huge volumes of data, which may be collected or donated to form large genomic databases. Such information can be stored for future use, either for the data donor themselves or by researchers to help improve our understanding of the genetic basis of disease. Creating datasets of this magnitude and diversity is only possible if patients, their families, and members of the public worldwide share their data. However, there is no consensus on the best technical approach to data sharing that also minimises risks to individuals and exploration of stakeholders’ views on aspects of genomic data governance models—the ways genomic data is stored, managed, shared and used—has been minimal. To address this need, we conducted focus groups with 39 members of the Australian public exploring their views and preferences for different aspects of genomic data governance models. We found that consent and control were essential to participants, as they wanted the option to choose who had access to their data and for what purposes. Critically, participants wanted a trustworthy body to enforce regulation of data storage, sharing and usage. While participants recognised the importance of data accessibility, they also expressed a strong desire for data security. Finally, financial responsibility for data storage raised concerns for inequity as well as organisations and individuals using data in ethically contentious ways to generate profit. Our findings highlight some of the trade-offs that need to be considered in the development of genomic data governance systems.
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Data availability
The datasets generated during the current study are available from the corresponding author on reasonable request.
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Acknowledgements
The authors thank the participants for their involvement. We would also like to thank Professor Mark Taylor for his advice in addressing some reviewer feedback.
Funding
The authors acknowledge the infrastructure funding received from the Victorian State Government through the Operational Infrastructure Support (OIS) Program. This work was supported by the Australian Government through the Medical Research Future Fund, as part of the Genomics Health Futures Mission (Grant number 76749).
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All authors contributed to designing the study and revising the paper. FL and DV conducted the focus groups, analysed the data, and drafted and revised the paper.
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Competing interests
YM is an associate at Analysis Group, Ltd. Research for this paper was undertaken when she was working at the University of Melbourne. JS is a Partner Investigator on an Australian Research Council Linkage award (LP190100841, Oct 2020‐2023) which involves industry partnership from Illumina. He does not personally receive any funds from Illumina. Julian Savulescu presented at a Genomic Prediction‐organised webinar (2021), but received no payment or other benefits from Genomic Prediction Ltd. JS is a Bioethics Committee consultant for Bayer. The remaining authors declare no competing interests.
Ethics approval
This study was reviewed and approved by The Royal Children’s Hospital Human Research Ethics Committee (HREC/79393/RCHM-2021). Participants provided voluntary, informed consent.
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Lynch, F., Meng, Y., Best, S. et al. Australian public perspectives on genomic data governance: responsibility, regulation, and logistical considerations. Eur J Hum Genet 32, 295–301 (2024). https://doi.org/10.1038/s41431-023-01381-1
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DOI: https://doi.org/10.1038/s41431-023-01381-1
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