Guest post: responsible data sharing in an increasingly open era

9 Jul 2018

The Global Alliance for Genomics and Health (GA4GH) has always prioritized responsible, ethical data sharing. Responsibility and the right to benefit from genomic research are at the heart of everything we do. After recent discussions in the international mainstream media, this message bears repeating.

This article is part of our quarterly series of guest blog posts from GA4GH Chair Ewan Birney, in which he expounds on the most important happenings from the previous three months and plans for the future. If you’d like to get involved with any of the work mentioned below, please contact one of our Work Stream managers.

The Global Alliance for Genomics and Health (GA4GH) has always prioritized responsible, ethical data sharing. Responsibility and the right to benefit from genomic research are at the heart of everything we do. After recent discussions in the international, mainstream media, this message bears repeating.

GA4GH is built upon the Framework for Responsible Sharing of Genomic and Health-related Data (“Framework“). Completed in 2014, this document set a new standard for how we view data sharing and scientific research. Citizens have the right for their data to be secure and protected; but in addition, the Framework is founded on the 1948 Universal Declaration of Human Rights, which states that everyone in the world has the right to benefit from science and its applications. As responsible data sharing minimizes risk and maximizes the possibility of health benefits, it is an important element of realizing that right.

Last month, about 150 GA4GH Active Contributors convened in Toronto, Canada for a face-to-face working meeting, during which we advanced the deliverables outlined in the 2018 Strategic Roadmap. One of the most important outcomes of the meeting was the development of a statement on responsible data sharing, which was truly a community effort. Initiated by Anna Middleton (Wellcome Genome Campus) and Bartha Knoppers (McGill University), the statement is intended to re-emphasise our commitment to responsible sharing and notes that “GA4GH encourages and supports the minimization of data-sharing risks and the prevention of data breaches.”

At the 6th Plenary Meeting in Basel, Switzerland in October, each of the GA4GH Work Streams will be releasing new deliverables from the Roadmap. Each of these takes the Framework and the GA4GH commitment to responsibility as its foundation.

For example, the upcoming Beacon API V1.0.0 release (expected later this month) integrates the ELIXIR Authorization and Authentication Infrastructure. This will enable any dataset to implement the Beacon Protocol and make it discoverable by the appropriate user base, and allow implementers to choose the authentication mode of potential users. This will open up a swath of learning potential, allowing the research community to query currently siloed databases without putting participant data at any additional risk and providing certainty of the data location and ownership.

Similarly, the htsget protocol, which announced five new implementations earlier this month, makes it possible for users around the globe to access genomic sequencing data without using files. This democratizing step brings us closer to genomics’ inevitable, cloud-based future and opens up new possibilities for the responsible use of genomic data to improve human health and allow citizens to benefit from scientific advancement.

In this increasingly open era of digital communications, data breaches are a foregone fact. Our focus — and our commitment to the international community — is to minimize risk and maximize benefit for every individual in the world. I look forward to watching the Work Streams tackle these impressive challenges with grace.

To learn about real-world examples of our progress in this effort, please join me at our Plenary Meeting in October. I hope to see many of you there!

Notable GA4GH Publications from Q2, 2018:

• Htsget: A protocol for securely streaming genomic data. Bioinformatics, June.
• Broaden human-rights focus for health data under GDPR. Nature. June.