Frequently Asked Questions
- What is the Global Alliance for Genomics and Health?
- Why is the Global Alliance for Genomics and Health necessary?
- Who are the members of the Global Alliance for Genomics and Health?
- How can my organization join the Global Alliance for Genomics and Health?
- How will the GA4GH ensure that the approaches and methods developed by the effort are being used?
- Does the Global Alliance for Genomics and Health store or analyze genomic data or conduct research?
- When was the Global Alliance for Genomics and Health founded?
- How is the Global Alliance for Genomics and Health governed?
- How is the Global Alliance for Genomics and Health funded?
- Does an organization have to share data to be a part of the Global Alliance for Genomics and Health?
- How is patient privacy being protected?
- I have a question that wasn't answered here. Where can I find answers?
Frequently Asked Questions
The Global Alliance for Genomics and Health (Global Alliance) is an international coalition, formed to enable the sharing of genomic and clinical data to help unlock potential advancements in medicine and science. Bringing together more than 300 leading institutions working in healthcare, research, disease advocacy, life science, and information technology, the Global Alliance is working together to create and promulgate harmonized approaches to enable the responsible, voluntary, and secure sharing of genomic and clinical data.
By aggregating and analyzing large amounts of data, it may be possible to discover patterns that would otherwise remain obscure. In principle, this wealth of integrated genomic data and clinical information could reveal the genetic bases of cancer, inherited disease, infectious diseases, and drug responses—illnesses and remedies that have touched nearly every person and family across the globe.
However, interpreting these data requires a larger evidence base than any one party alone can develop, and one that adheres to the highest standards of ethics and privacy. Today more and more data are being collected, but in many cases the data are either isolated in silos, or researchers are spending too much of their time collecting enough data to conduct meaningful analyses.
Members of the Global Alliance recognize that the public interest will be best served if they work together at an early stage in the growing popularity of genome sequencing, in order to develop and promulgate standards (both technical and regulatory) that will make it possible to share and interpret this wealth of information in a manner that is both effective and responsible.
The Global Alliance is a broad and inclusive organization that includes some of the world’s leading healthcare providers, research funders, research institutions, disease advocacy organizations, and life science and information technology companies. A complete list of partners is available here.
Please visit our Partners page to learn how to become a part of the Global Alliance.
The core of the Global Alliance’s mission is to develop and establish effective and responsible harmonized approaches for data sharing. For these tools and methods to have impact, they must be widely used, and researchers, funders, technology providers, and other members who actively participate in data sharing will have a strong interest in knowing whether any given entity that is storing and analyzing data is complying with approaches set by the Global Alliance.
To maximize use of its approaches, the Global Alliance will continue to improve upon incentives and opportunities, including highlighting of best practices and acting as a clearinghouse and networker for entities looking to share or access large amounts of data.
No. The Global Alliance for Genomics and Health is focused on setting harmonized approaches and acting as a convener and clearinghouse, building the framework that will enable entities involved in storing and analyzing genomic and clinical data to better collect and share such data in an interoperable and responsible way.
The Global Alliance does not itself generate, store, or analyze data, perform research, care for patients, or interpret genomes.
The origins of the Global Alliance for Genomics and Health trace to January 2013, when more than 50 colleagues from eight countries met to discuss current challenges and opportunities in genomic research and medicine and how their groups could work together to accelerate medical progress. A clear consensus emerged: that the greatest need is a common framework of harmonized approaches that will allow oversight of international standards designed to enable sharing of genomic and clinical data in an effective, responsible, and interpretable manner. In June 2013, 70 organizations came together by signing a Letter of Intent, publicly announcing their intentions to form a global alliance. For more information about the Global Alliance for Genomics and Health’s history, please see our History page.
The Global Alliance for Genomics and Health is a collaborative effort led by a Steering Committee. More information about the Global Alliance’s governance structure is available here.
The Global Alliance for Genomics and Health is a nonprofit organization dedicated to the public good. The organization is funded by a variety of means consistent with nonprofit funding, including philanthropic support, grants from research and government agencies, and other funding.
Does an organization have to share data to be a part of the Global Alliance for Genomics and Health?
The Global Alliance for Genomics and Health seeks active participation of diverse stakeholders with various perspectives, including funding institutions, patient advocacy groups, technology companies, and others who do not themselves generate or analyze data. While all members of the alliance are committed to advancing the goal of effective and responsible data sharing, some members may not themselves have data to share. At this point in the development of the Global Alliance, each organization decides for itself whether and how to apply these approaches and share data to advance human health.
Participant-centric consent is a core value of the Global Alliance for Genomics and Health’s work, and we respect the autonomy, privacy, and security choices of participants. Rather than focus on technology in isolation, the alliance includes ethicists and disease advocates, and has a core commitment to the idea that each individual should decide whether and how widely to share his or her own data.
The criteria for becoming an Organizational Member are:
- Your organization mission, operations, and public statements are consistent with the Global Alliance for Genomics and Health Constitution and Member Agreement.
- Your organization is an established entity (e.g., corporation, not-for-profit organization, partnership).
- Your organization has an open and professional presence (e.g., website).
- Your organization is active in the field of genomic research/medicine or related activity.
- Your organization ownership, governance, funding, and leadership is clearly identified.
Ongoing membership in the Global Alliance is dependent on active participation or engagement with the activities of the Alliance (12 months review).
As an Organizational Member of the Global Alliance for Genomics and Health, your organization will:
- Be featured on our website (genomicsandhealth.org).
- Be able to recommend individuals from your organization to participate in Global Alliance Working Groups (at invitation of the Working Group Chair), Task Teams, and other projects.
- Be able to assign contacts in your organization to receive regular communications from each of the active Working Groups.
- Be able to participate in regular meetings of Global Alliance membership.
Organizational Membership may be declined or removed at the discretion of the Executive Director and the Steering Committee. In the case of Organizational Membership being removed, the Primary (see below) will be notified by the Executive Director prior to removal of Membership.
To cancel Organizational Membership, the Primary can send an email to the Executive Director of the Global Alliance for Genomics and Health.
The Signup Process for Organizational Members
The Primary is the main representative and point of contact for your organization. The Primary has the authority to make decisions for your organization or can coordinate decisions for your organization. The Primary manages the organization’s profile or may delegate this activity to an Administrator. This contact will receive general updates, plenary invitations, and other communications from the Alliance.
The Administrator manages the organization’s profile and ensures that all of your organization’s information is correct, including contacts assigned to receive email communications and updates from each of the active work areas (Working Groups). The Administrator will receive operational notices, such as needs to update contact information, provide an organization logo, etc. The Administrator can be the same contact as the Primary if appropriate.
The Signer has signing authority for the organization as an entity and will sign the Membership Agreement that will make the organization an Organizational Member of the Global Alliance. The Signer will not receive routine updates about the Alliance or Working Groups. The Signer can be the same contact as the Primary if appropriate.
To apply to become an Individual Member:
- You must agree to and accept the terms of the Global Alliance for Genomics and Health Constitution and Member Agreement.
- You must be active in the field of genomic research/medicine or related activity.
- You must support the data sharing mission and efforts of the Global Alliance.
- You must provide contact information including a valid email address.
As an Individual Member of the Global Alliance for Genomics and Health, you will:
- Be eligible to participate in any of the active Working Groups (at invitation of the Working Group Chair).
- Receive regular communications from the Alliance and any of the active Working Groups selected.
- Be invited to attend regular meetings of the Alliance.
Yes, we recommend that anyone who is interested in GA4GH becomes an Individual Member, even if their organization is already an Organizational Member. Individual Membership will ensure that you receive important communications, news, and meeting invitations directly to your inbox, and will keep you directly engaged with GA4GH activities. You will also be able to manage your contact information and preferences for receiving regular communications from any of the active Working Groups.
Individual Membership may be declined or removed at the discretion of the Executive Director. In the case of Individual Membership being removed, you will be notified by the Executive Director prior to removal of your membership.
You may cancel Individual Membership at any time by selecting “Cancel Individual Membership” from your profile.