Global Alliance for Genomics & Health - Peter Goodhand
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The document discusses the opportunity and challenge of genomic data sharing to advance human health. It describes the Global Alliance for Genomics and Health as a non-profit organization that aims to establish common frameworks to enable effective and responsible sharing of genomic and clinical data through harmonizing approaches and catalyzing data sharing projects. The Alliance operates through a distributed model with staff at host institutions, a transitional steering committee, working groups addressing key issues, and task teams developing solutions.
Global Alliance for Genomics & Health - Peter Goodhand
- 2. The opportunity An explosion of genomic information from individuals with known clinical characteristics and disease outcomes Learning from these data, we should accelerate progress in: • Cancer outcomes and targeted therapy • Understanding the basis of inherited disease • Infectious disease • Identifying targets for drug development Enable clinical interpretation of individual genome sequences
- 3. The challenge Data from millions of samples may be needed to achieve results and progress - showing patterns that would otherwise remain obscure. That will take new methods and organizational models. Right now: • Data is typically in silos: by type, by disease, by institution • Analysis methods are non-standardized, few at scale • Approaches to regulation, consent and data sharing limit interoperability If we don’t act: risk a hodge-podge of Balkanized data, such as electronic medical records in the USA
- 4. What can we do? Work together internationally to ensure interoperability of data and of methods, to harmonize approaches to ethics and regulation, and to promote participant autonomy Support pilot projects that responsibly and effectively harmonize, analyze and share genomic and clinical data Engage professional communities and the public; build trust and encourage appropriate sharing and learning
- 5. What is the Global Alliance for Genomics and Health?
- 6. Mission To accelerate progress in human health by helping to establish a common framework of harmonized approaches to enable effective and responsible sharing of genomic and clinical data, and by catalyzing data sharing projects that drive and demonstrate the value of data sharing
- 7. Theory of change After discussion and feedback by partners, it was concluded that the Global Alliance has the best chance to succeed and achieve our mission if we: • Gather a broad and diverse network of stakeholders • Publicly commit to advancing progress in data sharing • Establish a common frameworks of approaches to this goal • Catalyze interactions and shared activity among the members: in particular data sharing pilot projects that drive the work of and are supported by the Alliance
- 8. Roles in the biomedical ecosystem Convene stakeholders Catalyze sharing of data Create harmonized approaches Act as a clearinghouse Foster innovation Commit to responsible data sharing
- 9. A fast paced non-profit start-up… Starting in 2013 January 2013: 50 people from eight countries met in NYC to define the problem and consider solutions June 2013: after having engaged 80 people in writing a White Paper, we announced the formation of the Alliance with 73 organizations as Partners to take on the challenge December 2013: four Working Groups up and running; Expanded Steering Committee; Executive Staff at Host Organizations; Progress on governance, branding…
- 10. …gaining momentum in 2014 First face-to-face meeting of Alliance partners at the Wellcome Trust on March 4th: included 180 participants from 100 partner organizations and 17 countries Increased membership to over 180 partners in 26 countries, including leading information and life science companies All four Working Groups are advancing their topics, new Working Groups are in formation, task and project teams launched
- 11. Partner overview Last Update: May 8, 2014 Global Alliance Partners Global Alliance partners include: 1. Universities and research institutes 2. Academic medical centres and health systems 3. Disease advocacy organizations and patient groups 4. Consortia and professional societies 5. Funders and agencies 6. Life science and information technology companies 186
- 12. Partner overview Last Update: May 8, 2014 Countries • Argentina • Australia • Austria • Belgium • Brazil • Canada • China • Denmark • Finland France • Germany • Hungary • India • Ireland • Japan • Mexico • Netherlands • New Zealand • Singapore • Spain • South Africa • Sri Lanka • Sweden • Switzerland • United Kingdom • United States 26
- 13. Long-term vision, near-term goals Long-term • An ever-growing network • A learning system in which data and models continuously improve • The potential to incorporate other types of data Near-term • The remainder of 2014 is about demonstrating value • Set and achieve practical working group goals • Organize around high priority projects • Define an effective sustainable model • Increase global engagement • Secure funding for the first 3 years
- 14. How does the Alliance operate?
- 15. 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 by partnering and building trust among stakeholders Collaboration to share data and information to advance human health Innovation in order to develop an ecosystem that accelerates progress Agility to ensure we act swiftly to benefit those suffering with disease
- 16. Lean, distributed operation Staff at multiple Host Institutions – not an incorporated entity • Ontario Institute for Cancer Research • Wellcome Trust Sanger Institute • Broad Institute / Brigham and Women’s Hospital Transitional Steering Committee, 12 Members Four Initial Working Groups to advance work on specific topics • Regulatory and Ethics • Data • Security • Clinical Multiple Task and Project teams
- 17. Transitional Steering Committee David Altshuler, Chair Broad Institute, MGH Martin Bobrow, Vice Chair University of Cambridge Kathryn North, Vice Chair Murdoch Childrens Research Institute Paul Flicek European Bioinformatics Institute David Haussler University of California, Santa Cruz Thomas J Hudson Ontario Institute for Cancer Research Kazuto Kato Osaka University Bartha Maria Knoppers McGill University Elizabeth Nabel Brigham and Women’s Hospital Brad Margus Genome Bridge Charles L Sawyers Memorial Sloan Kettering Cancer Center Peter C Goodhand Executive Director(A) Global Alliance for Genomics and Health
- 18. Established Working Groups Regulatory and Ethics- Bartha Knoppers, Kazuto Kato, Partha Majumder Focused on ethics and the legal and social implications of the Global Alliance, including harmonizing policies, developing consents, privacy procedures, and guidelines for data privacy, security, governance and transparency. Data- David Haussler, Richard Durbin Concentrates on data representation, storage, and analysis, including working with platform development partners and industry leaders to develop APIs and standards that will facilitate interoperability. Security- Paul Flicek, Dixie Baker Leads the thinking on the technology aspects of data security, user access control, and audit functions; Working to develop or adopt standards for data security, privacy protection, and user/owner access control. Clinical- Charles Sawyers, Kathryn North Establishing linkages to phenotypic and clinical (health) informatics data. Rather than invent such standards, this group focuses on aligning genomic data activities with the ongoing international standards initiatives in clinical and health data. Visit our website to view the Working Group Priorities.
- 19. Our work model • Initial Working Groups with active membership • Developed initial work plan and priorities • Now evolving into steering committees supported by professional staff coordinators • Creating Task Teams and Project Teams to develop work products to address priority needs • Distribute initial drafts for comment to Interest Groups from partner organizations • Take comments on-board, iterate and distribute for broad comment • Final work product for reference implementation and adoption by partner organizations
- 21. 21 Need More Information? Visit our website for relevant materials and updates: List of Partner Organizations Working Group Priorities Document Working Group Work Products Sign Up for Updates
Editor's Notes
- #9: Convene stakeholders to share information, best practices, and enable interoperability Catalyze sharing of data among members, supporting pilot projects that drive progress Create harmonized approaches, identify and study best practices; where needed develop new approaches; and broadly disseminate common frameworks Act as a clearinghouse, with a network effect of sharing best practices, cross-pollinating ideas, and communicating across stakeholder communities Foster innovation by identifying driving problems, bringing together experts, lowering barriers to introducing new methods and data, and enabling discovery Commit to responsible data sharing, working together to promote high standards for ethics and ensuring participants have the choice to share data if they so choose
- #19: Visit our website at www.genomicsandhealth.org to view the Working Group priorities.