A Global Alliance to Enable Responsible Sharing of Genomic and Clinical Data
Over 70 leading health care, research, and disease advocacy organizations, including the Human Variome Project announced today that they have taken the first steps to form an international alliance dedicated to enabling secure sharing of genomic and clinical data to improve research into the genetic basis of human disease.
The cost of genome sequencing has fallen one-million fold, and more and more people are choosing to make their genetic and clinical data available for research, clinical, and personal use. However, interpreting these data requires an evidence base for biomedicine that is larger than any one party alone can develop, and that adheres to the highest standards of ethics and privacy. These organizations recognize that the public interest will be best served if we work together to develop and promulgate standards (both technical and regulatory) that make it possible to share and interpret this wealth of information in a manner that is both effective and responsible.
This alliance is now in the beginning stages of formation. Following the circulation of a White Paper, over 70 organizations from Africa, Asia, Australia, Europe, and North and South America, have joined together to form a non-profit global alliance that will work to develop this common framework, enabling learning from data while protecting participant autonomy and privacy.
Each organization has signed a non-binding Letter of Intent, pledging to work together to create a not-for-profit, inclusive, public-private, international, non-governmental organization (modeled on the World Wide Web Consortium, W3C) that will develop this common framework.
They have committed to furthering innovation by supporting the creation of open technology standards to support the development of interoperable information technology platforms that will embody these principles and accelerate progress in biomedicine. The aim is that ultimately data will be stored in platforms built using the interoperable standards. The common vision for the platforms is not that they will be a shared repository for data; rather, the platforms will enable sharing and learning regardless of where data are stored.
In annoncing the Global Alliance to Human Variome Project Consortium members, Professor Richard Cotton, the Project's Scientific Director said, "The envisioned work of the Global Alliance is entirely complementary to the Human Variome Project's work in ensuring the free and open sharing of genetic variant information is integrated into routine clinical practice in every country of the world. As a founding partner of the Global Alliance, we now have the opportunity to ensure that our work on the clinical side of medical genetics and genomics is of use and available to the research world."
For more information about the Global Alliance and to view the White Paper and list of signatories, see the announcement on the Broad Institute website.