Dr Danya Vears1,2, Dr Fiona Lynch1,2, A/Prof Stephanie Best2,3,4,5,6, Dr Yan Meng2, A/Prof Ilias Goranitis2, Dr Christopher Gyngell1,2
1Murdoch Children’s Research Institute, 2University of Melbourne, 3Peter MacCallum Institute, 4Victorian Comprehensive Cancer Centre, 5Sir Peter MacCallum Dept of Oncology, 6Australian Genomics
Storage and sharing of genomic data following diagnostic sequencing is critical to the future of genomic medicine. Data sharing increases the chance of finding a diagnosis for both current and future patients and can benefit clinical and pharmaceutical research. Yet, few studies have explored public perspectives on how and where data should be stored, with whom it should be shared, and how to obtain meaningful consent to do so.
To address this issue, we conducted 7 online focus groups with 39 members of the Australian public (mean age = 37 years; range 18-67). Focus groups were recorded, transcribed and analysed using inductive content analysis.
Participants were overall in favour of storing genomic data and were generally comfortable with data reuse to benefit the wider community, provided adequate consent had been obtained. However, they raised several concerns, including the potential for malicious data usage leading to discrimination, data security issues, and ensuring adequate regulation of access. Organisational trust was identified as an important factor regarding who should store and access the data and participants felt the responsibility should rest with less profit-driven entities. Informed and explicit consent was seen as key and many participants favoured a dynamic consent model to enhance autonomy and increase control regarding what the data could be used for.
Our findings have helped elucidate the complexities associated with developing a one-size-fits-all approach to data sharing and storage through the eyes of the Australian public. These results can be used to help guide policy development on these issues.
Biography:
Dr. Danya Vears is a social scientist with a genetic counselling background who explores ethical issues relating to genetic testing. She is a Senior Research Fellow and Team Leader at the Biomedical Ethics Research Group, Murdoch Children’s Research Institute, and holds an honorary position at University of Melbourne