Secure storage and ethical sharing of genomic data is complex but can be incredibly beneficial. From continuity of care to new gene discoveries, data sharing is essential to the development of genomic medicine.
While the general public is reluctant to donate their DNA for research, a paper by Dr Melissa Martyn looked at the actual choices made by actual patients. The study documented the data sharing decisions of 1515 patients who were having clinical genomic testing for themselves or their child and asked them about data sharing.
Patients overwhelmingly agree to share their data
Almost all the patients (98%) consented to share their (or their child’s) data. Notably, the group was a clinical – not research – sample, with patients asked through their test consent forms. The patients were from a number of different hospitals in Victoria and include the voices of groups who are traditionally underrepresented in research. Parents consenting on behalf of their children were over-represented amongst those who declined to share their data.
Most patients who responded to the survey (89%) wanted some sort of ongoing control over use of their data. Additionally, of those willing to share their data internationally (60%), 23% indicated that the country would affect their decision.
While more work is needed, based on the sample it looks like there are four different ways patients think about data sharing:
- Absolute believers, who want to share their data
- Those with faith in processes, who believe that doctors and scientists will look after them and their data
- Information seekers, who are cautiously optimistic about data sharing, but would like to know more
- Mistrusters, who desire a high level of control and would like to be informed every time about who is requesting their data and for what purposes.
These insights can help healthcare leaders and policy-makers understand what information, systems and processes need to be in place so patients can make empowered and informed decisions about sharing their data.
Design that puts patients first
While a lot of work has been done on research data sharing, healthcare and digital health experts also need to work on clinical data sharing and its different demands. The results raised specific design considerations for developing data sharing systems and processes for reuse of data generated through clinical testing.
First, materials provided to patients should explicitly state who will not be able to access their genomic data. There was a lot of confusion about whether or not groups such as insurers or employers had access. Making it clear who can’t access the data is critical to decision making.
Second, information about general security and privacy measures should be made available. This was especially valuable for ‘information seekers’ who want to know more before deciding. They also value having the information readily available to review as questions arise.
Third, the consent choices need to be tailorable. Not all patients are satisfied with providing blanket consent for international data sharing. They care about who is asking for their data and what for. The ability to opt out at any stage is also important.
Finally, researchers and data experts need to be better at engaging with those who decline data sharing. While some people are going to say no, there are also those who decline because of historical breaches of trust by the research community or experiences of persecution. Researchers need to engage with people with no trust in data sharing to find out why. It’s particularly important in genetics and genomics, given the underrepresentation of certain groups in databases. Doing so can help experts design systems and processes that empower underserved groups and minimises bias.
A considered, patient-centred approach to genomic data sharing is key to developing platforms and policies that work for the people it serves.
August 2024