4 February 2019
Personalized health research is essential to the development of our knowledge about the treatment and prevention of diseases.
For this, it is necessary to set up mechanisms to make volunteer patient data available in a secure and interoperable way. GA4GH is a nonprofit international alliance, coordinating efforts to establish frameworks and standards to enable the responsible and secure sharing of genomic and health-related data. Becoming a Driver Project of the alliance is a strong recognition of Switzerland's SPHN initiative that will contribute to develop and pilot global standards for sharing genomic and health-related data.
«Switzerland has a long tradition of actively contributing to international frameworks and standards in life sciences and bioinformatics. Becoming a driver project for GA4GH will allow us to align our national initiatives with global efforts for genomic data sharing for the benefit of human health», said Torsten Schwede, Chair of the SPHN Scientific Expert Board.
SPHN is a national initiative designed to promote the development of personalized medicine and personalized health in Switzerland. The Swiss Academy of Medical Sciences (SAMS) heads the implementation of the initiative on behalf of the Federal Government. SPHN will build the infrastructure necessary to exploit the diversity of health-related data for research and innovation.
SIB Swiss Istitute of Bioinformatics plays a key role in Switzerland’s personalized health research landscape by building the infrastructure backbone and providing essential bioinformatics and data science expertise. The role of SIB‘s Personalized Health Informatics Group (PHI) is to establish mechanisms for nationwide interoperability and sharing of health-related data, in particular in the context of the Swiss Personalized Health Network initiative (SPHN). The PHI group manages both, the SPHN Data Coordination Centre (DCC) and the BioMedIT project, laying the foundations needed to facilitate research projects by building a dynamic scalable network of data providers based on common standards for formats, semantics, governance, and exchange mechanisms.
While many of the SPHN research efforts are already contributing to the GA4GH work streams individually (such as clinical phenotypic data capture, security and cloud), this overarching Driver Project will align with GA4GH’s global efforts, contributing to the development of international frameworks and standards. Such a close collaboration will be beneficial to the SPHN initiative, as well as international partners and the biomedical community in general.
The other newly added projects are: Human Heredity and Health in Africa (H3Africa), GEnome Medical alliance Japan (GEM Japan), European Joint Programme on Rare Diseases (EJP RD), EUCANCancer, EpiShare, and Autism Sharing Initiative.
The projects were reviewed by an External Review Committee (Chair: David Altshuler, Vertex Pharmaceuticals; Co-Chairs: Niklas Blomberg, ELIXIR, and Kym Boycott, CHEO) and unanimously approved by the GA4GH Executive Committee. The projects were selected according to three criteria: global representation, scientific merit, and capacity to contribute in-kind resources to GA4GH development efforts.
“When we launched GA4GH Connect two years ago, I could only have hoped to reach the state we are in now, with global buy-in from some of the world’s most important genomics projects and a true mandate for GA4GH to help get data sharing off the ground in the near term,” said Ewan Birney, Director of EMBL-EBI and Chair of GA4GH.
Read the SIB article: Switzerland to contribute to the definition of international genomic data sharing standard.
Read the SAMS article: SPHN strengthens its international collaboration
Read the GA4GH press release: seven international genomic data initiatives named GA4GH Driver Projects
The Global Alliance for Genomics and Health (GA4GH) is an international, nonprofit alliance formed in 2013 to accelerate the potential of research and medicine to advance human health. Bringing together 500+ leading organizations working in healthcare, research, patient advocacy, life science, and information technology, the GA4GH community is working together to create frameworks and standards to enable the responsible, voluntary, and secure sharing of genomic and health-related data. All of our work builds upon the Framework for Responsible Sharing of Genomic and Health-Related Data.
The Swiss Personalized Health Network (SPHN) is a national initiative designed to promote the development of personalized medicine and personalized health in Switzerland. SPHN will lay the foundations that are needed to facilitate research projects in this area such as a system for a nationwide exchange of health-related data.
The ultimate goal is to promote health and well-being, to prevent, diagnose and treat unfavourable health conditions more precisely, thus reducing the risk of developing such conditions and permitting more effective treatments of disease states with fewer adverse effects.
The SIB Swiss Institute of Bioinformatics is an academic not-for-profit organization whose mission is to lead and coordinate the field of bioinformatics in Switzerland. Its data science experts join forces to advance biological and medical research and enhance health.
Engaged in science and research politics, the Swiss Academy of Medical Sciences (SAMS) provides expert activity for the attention of politicians and authorities. The academy comprehensively reflects the future of medicine and promotes the professional training of the coming generation of scientists. Moreover, the SAMS focuses on the clarification of ethical questions concerning medical developments and their social impact.