The organization will develop standards and policies to encourage data-sharing

- The first steps to create this alliance were made by over 70 leading health care, research, and disease advocacy organizations in order to enable secure sharing of genomic and clinical data.

- 3 of the partners are Spanish: the Centre for Genomic Regulation (CRG), the Centro Nacional de Análisis Genómico (CNAG) and the Spanish National Cancer Research Centre (CNIO).

 

Over 70 leading health care, research, and disease advocacy organizations that involve colleagues all across the world have taken the first steps to form an international alliance dedicated to enabling secure sharing of genomic and clinical data. Among these institutions, there are 3 Spanish centers: the Centre for Genomic Regulation (CRG), the Centro Nacional de Análisis Genómico (CNAG) and the Spanish National Cancer Research Centre (CNIO).

 

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.

 

"Achieving a system for secure sharing of genomic and clinical data will hugely accelerate findings that will benefit patients. It should be kept in mind that all of us at some point in our lives are patients.", says Ivo Gut, Director of the CNAG. "Sharing will benefit us all."

 

"Now that sequencing a genome is becoming cheaper everyday, one single institution can't cope with the vast information coming from both the personal genomic data that users make available for research and from the fast pace biomedical findings are happening", says Luis Serrano, Director of the CRG. "Being part of this pool of expert centers is an invaluable step forward for Spanish research institutions. It is just a first step and we have a lot of work ahead to do".

 

Partner institutions 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.

 

CNAG & CRG Press Release

 

Global Alliance List of Partners

 

Global Alliance White paper