Global Alliance Focused on Responsible Data Sharing Shows Progress in Standards Development and Membership at First Partner Meeting

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By Broad Communications,

The Global Alliance for Genomics and Health (GA4GH), an alliance of over 150 of the world’s leading biomedical research institutions, healthcare providers, information technology and life science companies, funders of research, and disease and patient advocacy organizations, announced progress since the group’s formation and plans for future work at a partner meeting held today at the Wellcome Trust in London. The Global Alliance aims to accelerate the world-wide effort to responsibly aggregate and analyze large amounts of genomic and clinical information – seeking best practices where they exist, and developing new approaches where needed – in order to advance the understanding, diagnosis, and treatment for cancer, inherited diseases, infectious diseases, and drug responses.

Almost two hundred of the world’s leading experts in healthcare, biomedical research, technology, ethics, and patient advocacy met today for the first face-to-face GA4GH partner meeting. The key challenge partners addressed is that while a wealth of genome sequence information is set to be gathered, such information becomes interpretable only when compared across many individuals. Yet existing data sets sit in separate silos, with incompatible methods and under complex regulation, creating barriers to such comparison and possible discovery. The meeting focused on coordinating the development of harmonized approaches and interoperable methods to enable learning and make it easier for all to explore the transformational potential of genomic data.

“Just over a year ago, leaders in the field came together to discuss the historic opportunity to utilize the growing wealth of genetic data to benefit humanity, and the growing challenges of data silos and incompatible information that must be overcome to realize this benefit,” said David Altshuler, Chair of the GA4GH Transitional Steering Committee, Deputy Director of the Broad Institute of Harvard and MIT, and a physician at Massachusetts General Hospital. “In a remarkably short time we have progressed from initial conversations to a working alliance made up of over 150 non-profit and for-profit organizations in over 20 countries. Together, we are collaborating to share knowledge and experience, identify and disseminate best practices, and, where needed, develop high-impact, innovative solutions to accelerate progress to benefit medicine and human health.”

The Global Alliance for Genomics and Health aims to enhance sharing and interpretation of genomic and clinical information – and build on existing work, best practices, and approaches – by acting as a global clearinghouse, innovator, catalyst, and hub for data sharing efforts. The group is also focused on protecting patient and participant autonomy and privacy, and partners are working together to promote the highest standards for ethics and to ensure that participants have the choice to responsibly and securely share their genomic and clinical data.

“Since its inception, the Global Alliance has focused on the goal of achieving better data sharing and interoperability to advance science and leverage the positive impact of genomic information on human health,” said Mike Stratton, Director of the Wellcome Trust Sanger Institute. “As part of these important meetings here at the Wellcome Trust, partners are coming together in person to actively discuss ideas and work on products that will lead to a common framework of widely used approaches to advance responsible data sharing and protect privacy.”

Stemming from an initial meeting held in January 2013, last June almost 70 organizations announced their intention to form a global alliance to tackle the challenges of genomic and clinical data sharing. Since then, the inclusive effort has doubled its membership and continued to bring on world-leading organizations from a wide range of critical fields to collaborate on solutions. The Global Alliance for Genomics and Health now has 151 partners, all of whom offer important perspectives and expertise and are pooling their intellectual resources to develop and harmonize approaches to data sharing and enabling discovery. Since its initial formation, the GA4GH has brought on highly-esteemed research and health institutions with broadened international representation, partners from over 20 leading life science and information technology companies, including world leaders in cloud computing, biotechnology, and healthcare generally, and additional respected disease and patient advocacy groups.

“The Global Alliance for Genomics and Health is a key next step in the efforts that began with the Human Genome Project," said Francis S. Collins, M.D., Ph.D., Director of the National Institutes of Health. "We know that genomic medicine is poised to have a transformative impact, but we still face significant barriers to deploying it effectively. The work of the Global Alliance is intended to break down one of the critical barriers, catalyzing effective, responsible sharing of data sets, in order to benefit science and medicine throughout the world."

To advance this important work, the Global Alliance for Genomics and Health has convened Working Groups focused on areas critical to enabling effective and responsible data sharing:

  • The Genomic Data Working Group concentrates on data representation, storage, and analysis of genomic data, including working with academic and industry leaders to develop approaches that facilitate interoperability.

  • The Security Working Group focuses on ensuring sensitive information is kept secure, including technology aspects of data security, user access control, and audit functions, working to adopt or develop standards for data security, privacy protection, and user/owner access control.

  • The Regulatory and Ethics Working Group focuses on ethics and the legal and social implications of the Global Alliance, including harmonizing approaches, policies, and standards, and developing forward-looking consent, privacy procedures, and best practices in data governance and transparency.

  • The Clinical Working Group is working to identify best practices and establish linkages to phenotypic and clinical (health) informatics data. Rather than invent such standards, this Working Group is focusing on aligning genomic data activities with the ongoing international standards initiatives in clinical and health data.

Currently, GA4GH Working Groups are laying the groundwork for genomic and clinical data sharing. For example, to help facilitate the exchange of information, Genomic Data Working Group members have collaborated with leading experts in the public and private sectors to update the current industry-standard file formats for relevant data, and are developing forward-looking machine-readable interfaces (“APIs”) to enable the exchange of variation in genome sequences across groups.

As another example, Regulatory and Ethics Working Group members have begun developing an International Code of Conduct centered on harmonizing approaches around core elements of consent to ensure that patient and participant autonomy and privacy are protected when genomic and clinical data are shared. An extensive survey of existing approaches and ethics guidelines is underway, and the in-person meetings in London produced a framework outline that will be refined and expanded in collaboration with stakeholders across the world.

“The outcomes of the plenary and Working Group meetings and our continued work will help meet the challenge of genomic and clinical data sharing and enable real solutions that break down existing data sharing barriers,” said Kathryn North, Vice Chair of the GA4GH Transitional Steering Committee, Director of the Murdoch Childrens Research Institute, and the David Danks Professor of Child Health Research at the University of Melbourne. “By bringing together leading experts across sectors and giving them the forum to collaborate on innovative solutions, the Global Alliance for Genomics and Health is able to act as a convener and catalyst for data sharing in an inclusive and effective way.”

The Global Alliance for Genomics and Health is an international, non-profit alliance formed to help accelerate the potential of genomic medicine to advance human health. Bringing together over 150 leading institutions working in healthcare, research, disease and patient advocacy, life science, and information technology, partners in the Global Alliance are working together to create a common framework of standards and harmonized approaches to enable the responsible, voluntary, and secure sharing of genomic and clinical data. Learn more at: http://genomicsandhealth.org.

 

Global Alliance for Genomics and Health: List of Partner Organizations

151 Signatories to the Letter of Intent as of March 4th, 2014

Countries Represented: Argentina, Australia, Austria, Belgium, Canada, China, Finland, France, Germany, Hungary, India, Japan, Mexico, Netherlands, Singapore, Spain, South Africa, Sweden, Switzerland, the United Kingdom, and the United States.

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