Australian public perspectives on genomic data storage and sharing: Benefits, concerns and access preferences

Diagnostic genomic sequencing generates unprecedented amounts of data. In addition to its primary use, this data could be used for a wide range of secondary purposes, including research and informing future healthcare for the data donor. These opportunities may require data to be shared with third parties. Although effective data sharing relies on public support, there are barriers which may prevent people from choosing to donate their genomic data and surprisingly few studies explore these barriers in depth. To address this need, this study aimed to qualitatively explore the Australian public's views and preferences for storing and sharing genomic data. Online focus groups were recorded, transcribed, and analysed using inductive content analysis. A total of 7 focus groups were conducted with 39 members of the Australian public ranging from 18 to 67 years of age. Participants were mostly supportive of genomic data being stored and shared for secondary purposes, recognising the potential benefits for individual health and wider medical research. However, some concerns were identified. Participants felt genomic data was particularly sensitive information, and raised the potential for discrimination, stigma, and other malicious uses of such data. Concerns for privacy and security of the data were also prevalent. Trustworthiness of data users was important when considering who genomic data should be shared with. Although participants were supportive of data being freely available to health professionals and researchers, they were opposed to insurance companies and employers accessing the data. There was greater controversy around sharing data with law enforcement and pharmaceutical companies. Participants recognised both benefits and harms to sharing with law enforcement. They were also cognizant of the dual purpose of pharmaceutical companies as both research and profit-driven organisations. Finally, participants expressed varying perspectives about sharing genomic data with family members, yet most agreed that explicit consent from the data donor should be required to share their information with relatives. This study highlighted several of the Australian public's perceived barriers and motivators for the storage and sharing of genomic data. Participants recognised both the benefits of collecting, storing and sharing such data widely but also the potential for harm from data misuse. While public acceptance of such endeavours is required to maximise the volume of data made available, the concerns around data access and security need to be addressed before this can occur. These findings also highlight the nuance and ethical complexity of decisions about who we should allow to access donated genomic data. These perspectives will be essential in helping to shape the way large-scale genomic data storage and sharing is developed and implemented in Australia, and internationally.