The origins of the alliance trace to January 2013, when 50 colleagues from eight countries met to discuss the current challenges and opportunities in genomic research and medicine. They discussed how their groups could work together to accelerate medical progress, building on the experience and best practices of genetics programs around the world
The Challenge and the Opportunity
We are at the cusp of a tremendous opportunity in human health. Technological and conceptual advances have led to large-scale collection of data on genome sequence and clinical outcomes, with great promise for medicine.
The cost of genome sequencing has fallen one-million-fold and it is increasingly becoming routine that genetic information is collected for research, clinical, and personal use. By aggregating and analyzing large amounts of such data, it is possible to discover patterns that would otherwise remain obscure. In principle, this wealth of integrated genomic data and clinical information could reveal the genetic bases of cancer, inherited diseases, infectious diseases, and drug responses—illnesses and remedies that have touched nearly every person and family across the globe.
However, interpreting these data requires a larger evidence base than any one party alone can develop, and one that adheres to the highest standards of ethics and privacy. Today more and more data are being collected, but in many cases the data are isolated in silos, or researchers are spending too much of their time collecting enough data to conduct meaningful analysis. Additionally, existing technologies, regulations and approaches to consent are currently not designed for sharing and interpreting this wealth of information effectively, especially across diseases and nations.
If nothing is done, there is a risk that balkanized systems will soon become established (as happened for electronic medical records in the United States), a significant lost opportunity to make important advances in human health.
The Formation of a Global Alliance
These challenges and opportunities in genomic research and medicine led a group of 50 colleagues from eight countries to meet in January 2013. They discussed how their groups could work together through an inclusive process to accelerate medical progress, building on the experience and best practices of genetics programs around the world. A clear consensus emerged from this meeting: that a great and unmet need was the lack of a common framework of harmonized approaches that would enable sharing of genomic and clinical data in an effective, responsible, and interpretable manner.
The group envisioned a trusted and authoritative international alliance, intended to include a range of key stakeholders, including organizations, institutions, and leaders from research, disease advocacy, life science and information technology companies, and others. Rather than catalyzing a single, monolithic approach, it was decided that an umbrella effort was needed, larger than any given project, disease, or jurisdiction, in order to take on the larger challenges that currently inhibit data sharing in genomic, health, and disease work.
To move this idea forward, a highly engaged group of over 80 individuals wrote an initial draft White Paper describing the opportunity and need, and a future path. A non-binding Letter of Intent (LOI) to form the alliance was circulated, and in June 2013, the first 70 signers of the Letter of Intent publicly announced plans to form a global alliance, receiving positive coverage in national and international media.
After the initial announcement in June of 2013, the Global Alliance for Genomics and Health quickly grew its membership, diversifying its sectors and geographic reach, and developed a lean, working structure, led by a 12-member Steering Committee and enabled by four nimble Working Groups concentrating on: (1) Genomic Data, (2) Clinical Data; (3) Security and Privacy; and (4) Regulatory and Ethics.
In March 2014, the Global Alliance held its first face-to-face plenary meeting, hosted by the Wellcome Trust in London. The meeting was attended by almost two hundred leaders and experts, and gave partners the opportunity to hear from Working Groups and offer feedback on current efforts.