Corporate Banner
Satellite Banner
Pharma Outsourcing
Scientific Community
Become a Member | Sign in
Home>News>This Article

Global Alliance to Enable Secure Sharing of Genomic and Clinical Data

Published: Monday, June 10, 2013
Last Updated: Monday, June 10, 2013
Bookmark and Share
Over 70 leading organizations have taken the first steps to form an international alliance dedicated to enabling secure sharing of genomic and clinical data.

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.


Technological advances have led to large-scale collection of data on genome sequencing and clinical outcomes, with great promise for medicine. In late January, 50 colleagues from eight countries met to discuss the current challenges and opportunities in genomic research and medicine, and how these groups could work together to foster medical progress. They concluded that the greatest need was a common framework of international standards designed to enable and oversee how genomic and clinical data are shared in an effective, responsible, and interpretable manner. They envisioned a trusted and authoritative international partnership, intended to include leading healthcare providers, research institutions, disease advocacy groups, life science and information technology companies, and others, to facilitate this.

This alliance is now in the beginning stages of formation. Following the circulation of a White Paper, nearly 70 organizations from North and South America, Europe, Asia, Australia, and Africa 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. Their shared vision is that ultimately data will be stored in platforms built on the interoperable standards. Whether participants and organizations put all or some data into these or other platforms will be their own decision, but 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 from data wherever it is stored.

In signing the Letter of Intent, the organizations have committed to the global alliance having the following core principles:

•    Respect–for the data sharing and privacy preferences of participants
•    Transparency–of governance and operations
•    Accountability–to best practices in technology, ethics, and public outreach
•    Inclusivity–partnering and building trust among stakeholders
•    Collaboration–sharing data and information to advance human health
•    Innovation–developing an ecosystem that accelerates progress
•    Agility–acting swiftly to benefit those suffering with disease

Member organizations recognize that when discussions occur about sharing large amounts of data, important questions about ethics and privacy naturally arise. Accordingly, members have committed to work together to establish a framework so that participants will have the right to share genomic and clinical information to advance human health as broadly or narrowly as they are comfortable with, including not at all.

Further Information
Access to this exclusive content is for Technology Networks Premium members only.

Join Technology Networks Premium for free access to:

  • Exclusive articles
  • Presentations from international conferences
  • Over 2,800+ scientific posters on ePosters
  • More than 4,000+ scientific videos on LabTube
  • 35 community eNewsletters

Sign In

Forgotten your details? Click Here
If you are not a member you can join here

*Please note: By logging into you agree to accept the use of cookies. To find out more about the cookies we use and how to delete them, see our privacy policy.

Related Content

Broad Institute, Dana-Farber and Novartis Collaborate to Develop Cancer Cell Line Encyclopedia
Scientists have written the 'Book of Cancer Knowledge' to aid future research into drug discovery and personalized medicine.
Friday, March 30, 2012
Scientific News
Lucentis Effective for Proliferative Diabetic Retinopathy
NIH-funded clinical trial marks first major advance in therapy in 40 years.
Blocking the Transmission Of Malaria Parasites
Vaccine candidate administered for the first time in humans in a phase I clinical trial led by Oxford University’s Jenner Institute, with partners Imaxio and GSK.
First Therapy Appearing to Reverse Decline in Parkinson’s
An FDA-approved drug for leukemia improved cognition, motor skills and non-motor function in patients with Parkinson’s disease and Lewy body dementia in a small clinical trial, say researchers at Georgetown University Medical Center (GUMC).
Gene Therapy Staves Off Blindness from Retinitis Pigmentosa in Canine Model
NIH-funded study suggests therapeutic window may extend to later-stage disease.
Treatment for Rare Bleeding Disorder is Effective
Researchers in Manchester have demonstrated for the first time the relative safety and effectiveness of treatment, eltrombopag, in children with persistent or chronic immune thrombocytopenia (ITP), as part of an international duo of studies.
HIV Vaccine Human Trials Begin
Baltimore-based Institute has begun enrolling volunteers for initial phase 1 clinical trials.
New Therapy Reduces Symptoms of Inherited Enzyme Deficiency
A phase three clinical trial of a new enzyme replacement medication, sebelipase alfa, showed a reduction in multiple disease-related symptoms in children and adults with lysosomal acid lipase deficiency, an inherited enzyme deficiency that can result in scarring of the liver and high cholesterol.
Fixing Holes in the Heart Without Invasive Surgery
UV-light enabled catheter is a medical device which represents a major shift in how cardiac defects are repaired.
Atriva Therapeutics GmbH Develops Innovative Flu Drug
Highly effective against seasonal and pandemic influenza.
Study Removes Cancer Doubt for Multiple Sclerosis Drug
Researchers from Queen Mary University of London are calling on the medical community to reconsider developing a known drug to treat people with relapsing Multiple sclerosis after new evidence shows it does not increase the risk of cancer as previously thought.
Scroll Up
Scroll Down

Skyscraper Banner
Go to LabTube
Go to eposters
Access to the latest scientific news
Exclusive articles
Upload and share your posters on ePosters
Latest presentations and webinars
View a library of 1,800+ scientific and medical posters
2,800+ scientific and medical posters
A library of 2,500+ scientific videos on LabTube
4,000+ scientific videos