DNAdigest interviews GA4GH

This week I am extremely excited to introduce you to Julia Wilson, Associate Director at the Wellcome Trust Sanger Institute. In this interview Julia tells us more about the Global Alliance for Genomics and Health (GA4GH), the current projects and working groups, the recently published first Road Map and the 3rd GA4GH plenary meeting in June that we all are so excited about.

Julia Wilson

Julia Wilson, Associate Director at the Wellcome Trust Sanger Institute

  1. Could you please give a short introduction to the Global Alliance for Genomics and Health?

The Global Alliance for Genomics and Health (Global Alliance) was formed less than two years ago when key players in the field of genomics came together to discuss how we could help accelerate the use the potential of genomics to advance human health. Since then the Global Alliance brings together almost 300 institutions from 30 different countries. Member institutions are very varied and include those working in research, healthcare delivery, disease advocacy, and information technology. It is pretty unique being a mix of academic and commercial partners.

The partners in the Global Alliance are working together to enable genomic data sharing. This involves developing new software and creating a framework of harmonized approaches for the responsible, voluntary, and secure sharing of genomic and clinical data.

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  1. What is your role in the Alliance and how does your personal background support it?

I am Associate Director at the Wellcome Trust Sanger Institute with a remit for external relations and strategic partnerships as well as positioning the Institute as a thought-leader. The Global Alliance is exactly the type of international coalition we wish to work with in order to shape the international landscape of genomics research and its application to health.

The Global Alliance has very few staff; most of the work is achieved through expert volunteers. There are three ‘host institutions’ of the Global Alliance who provide core funding for a handful of dedicated staff. The host institutions are my own, the Wellcome Trust Sanger Institute, The Broad Institute and Ontario Institute for Cancer Research.

The Sanger Institute is based on the Wellcome Genome Campus and we see our involvement with the Alliance as being Campus wide, bringing insight and expertise from the Sanger Institute, the European Bioinformatics Institute (EMBL-EBI) and Elixir. We have around 25 people on campus who are leading working groups or task teams as well as delivering projects and developing products via these groups and teams.

My role is to oversee all campus activity, make connections between activities on this site and others, to liaise with other centres and engage with current and new partners.

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  1. In order to catalyze the sharing of genomic data GA4GH has formed different working groups. Could you please list them and give a short description of their priorities and aims?

The four Working Groups are Data, Security, Clinical, and Regulatory and Ethics. Each Working Group aims to deliver tangible, innovative and actionable work products that will enable genomic data sharing which in turn should lead to improvements in human health.

The Data Working Group concentrates on data representation, storage, and analysis of genomic data. This is a group where both academic and industry computational experts are developing computer interfaces and software that facilitate interoperability.

The Regulatory and Ethics Working Group focuses on ethics, and the legal and social implications of the work of the Global Alliance. This includes harmonising policies and research standards; there is a large focus on developing tools to improve the consent process. They also establish best-practices in data governance, transparency and privacy procedures.

The Security Working Group leads on all the technology aspects of data security. These include user access control, and audit functions. Again this group is working to develop or adopt international standards which others can use for data security, privacy protection, and user/owner access control.

The Clinical Working Group aims to establish methods and processes for sharing clinical data and linking this to genomic data.

Beneath the Working Groups is a series of task teams, the majority of these are Data Working Group task teams with projects developing interoperable technical standards for managing and sharing genomic and clinical data.

There are also three Demonstrator projects which cut across all of the Working Groups, harnessing relevant expertise as needed. These are Beacon, Matchmaker Exchange and BRCA Challenge.

The Beacon project is really exciting; it is a project to test the willingness of international sites to share genetic data in the simplest of all technical contexts. It is an open web service which allows a user to ask ‘does your dataset contain a genome with this particular allele?’ and get a simple yes or no answer. So far 12 Beacons have been lit making 120 datasets available to query without returning any privacy violating information.

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  1. What are the key objectives that GA4GH aims to pursue in the next couple of years?

The Global Alliance has developed a Road Map (this is still draft but available on the website and we would welcome any comments to improve this). This Road Map was guided by discussions with many different Alliance stakeholders and a planning session of the Steering Committee and leaders from Working Groups and projects in February this year.

From the road map you can see that in 2015 and 2016 the Global Alliance will be focused on some high-impact activities. These will include generating data-sharing software and delivering the demonstration projects, which we hope will lead to increased genomic data sharing and systemic change.

Longer term, GA4GH is working to promote a culture of widespread data sharing and help foster the connection of genomic medicine to clinical care.

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  1. Who can join the Global Alliance, and what do they have to do to get involved?

The Global Alliance for Genomics and Health is a broad and inclusive organisation. There are options to join as individual members or for organisations to join and we know that the Global Alliance actually needs both. It is individuals who are key to creating the new tools or the new frameworks, and delivering on projects and identifying new opportunities for the Alliance. But it is organisations who are key for ensuring that best practices are adopted and who can support and reward responsible data sharing. For example, both DNAdigest, the non-profit organisation dedicated to genomic data sharing and their spin-out company, Repositive, are members, each brings a different dimension and expertise to the Alliance.

However, I must stress that anyone in the world can use our software e.g. genomics API, or adopt our ethics policies and security recommendations, you do not need to be members or even have genomic data to share.

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  1. The 3rd GA4GH plenary meeting is scheduled for 9-11 June this year in Leiden, Netherlands. Could you give us some more details on the focus of the meeting and the planned discussions?

The first day on the 9th is a hands-on working day for the members of the Working Groups. They will meet to discuss projects and progress and next steps. Day two is the plenary where there will be a keynote address from Ewan Birney (Associate Director EBI), discussions of emerging projects, a session to highlight genomic activities in different countries, and sessions to inspire and engage. Day three is back to the Working Groups to assess suggestions and discussions and build a road-map of future activities and objectives for the individual working groups and teams.

3rd GA4GH plenary meeting, June 9-11, 2015 in Leiden, Netherlands

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Looking forward to see you at the GA4GH plenary in Leiden!

 Are you part of a project that facilitates data sharing for genomics research? Would you like to be featured on our blog? We would love to hear from you. Drop us an email at info@dnadigest.org or use our contact page to get in touch.

 

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