The Nature paper highlights one of the most challenging obstacles to data sharing: policy. Essentially, countries are taking different approaches to how they store and maintain data securely, often based on regionally specific cultural and social norms, making it difficult for big scientific collaborations to work across different countries. As the paper highlights, the challenges can vary; ranging from protection of potential intellectual property to concerns regarding national security.
These challenges are very much linked to the issue of public trust. GA4GH sees this as a critical issue, and we are demonstrating how public trust can be interwoven into policy by sharing the insights of researchers and the public around the world. By delving into this, we get a deeper understanding of community concerns, how they may differ by jurisdiction and how these values can be respected depending on the law of each country or state and to find common ground that can support interoperability.
Empowering individuals not only requires listening to them but also establishing processes through which they are able to understand how their data is going to be used in research. At GA4GH, we have established guidance on how to obtain consent from individuals and communities in different contexts, by developing a ‘Consent toolkit’ that allows researchers to adapt their consent processes to different contexts, for example, consent within paediatric clinical research.
This not only encourages organisations to recognise and respect consent but it has allowed GA4GH to build on these processes to develop tools such as DUO which looks at what patients and participants have consented to their data being used for and matches that permission with other datasets that have the same permissions. This allows researchers to identify multiple data sets they are allowed to use for their research and allows them to safely combine data in line with the permissions provided. By creating standardised frameworks for consent in genomic research, GA4GH supports researchers and clinicians to ensure that individuals’ rights are protected while maximising research value.
The stakes are high. Without an international solution that earns the trust of all countries, not only do we risk missing this rare opportunity, but countries may - understandably - turn to domestic measures to restrict and control the use of nature-based data that originates from within their borders. This could lead to a fragmented scientific data ecosystem, reducing the ability of researchers, including the Sanger Institute and its partners, and policy makers to understand and tackle global challenges like infectious disease spread and biodiversity loss.