Keeping the promise of data sharing is hard — and worth it

Dr. Clare Bernard is Head of Product in the Data Sciences Platform at the Broad Institute. In this blog post, she shares a commentary written with David Glazer, Terra Chief Technology Officer at Verily, and Dr. Greg Moore, Corporate Vice President of Microsoft Health & Life Sciences, reflecting on a recently published Nature News feature titled “The broken promise that undermines human genome research”. The article chronicles key milestones in genomics starting from the early days of the Human Genome Project; it highlights the importance of the project’s foundational data sharing principles, as well as the challenges the field faces moving forward. 

 


 

“Data sharing was a core principle that led to the success of the Human Genome Project 20 years ago. Now scientists are struggling to keep information free.”

— Kendall Powell, Nature News

 

In our work with biomedical data, we are fortunate to count many of the experts quoted in the article as friends and colleagues. We agree genomic data sharing is not yet living up to its promise, yet are optimistic about the emergence of new approaches and platforms.

We believe data sharing is a fundamental responsibility when working with human-sourced data. Honoring the people who volunteer data requires sharing it wisely and widely. Wise sharing means ensuring data is only used for intended agreed-on purposes; wide sharing means ensuring data IS USED. People want the data they make available for research to do good – it’s our shared responsibility to respect their wishes.

Our work with the AnVIL community, using the Terra research platform, supports these dual goals of wise and wide sharing. By embracing GA4GH standards and modular design, AnVIL ensures data isn’t trapped by technology. By bringing researchers to shared cloud-hosted data, AnVIL widens access via lower cost and complexity, and increases security via central authentication and auditing. And by supporting collaborative analysis, AnVIL lets researchers build on each other’s success, rather than reinvent the same wheels.

As global data volumes continue to grow, fulfilling the original promise of genomic data sharing becomes ever more challenging — and ever more important. Fortunately, the platform and standards used for AnVIL are also being used for other large datasets – the All of Us Research Program, BioData Catalyst, and more. We look forward to continuing to work with the community to keep the promise.

 


Citation: “The broken promise that undermines human genome research.” Nature 590, 198-201 (2021), doi: https://doi.org/10.1038/d41586-021-00331-5.

 

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