Learn how GA4GH helps expand responsible genomic data use to benefit human health.
Learn how GA4GH helps expand responsible genomic data use to benefit human health.
Our Strategic Road Map defines strategies, standards, and policy frameworks to support responsible global use of genomic and related health data.
Discover how a meeting of 50 leaders in genomics and medicine led to an alliance uniting more than 5,000 individuals and organisations to benefit human health.
GA4GH Inc. is a not-for-profit organisation that supports the global GA4GH community.
To guide our collaborative, globe-spanning alliance, GA4GH relies on a Standards Steering Committee and an Executive Committee.
The Funders Forum brings together organisations that offer both financial support and strategic guidance.
The EDI Advisory Group responds to issues raised in the GA4GH community, finding equitable, inclusive ways to build products that benefit diverse groups.
Distributed across four Host Institutions, our staff team supports the mission and operations of GA4GH.
Curious who we are? Meet the people and organisations across six continents who make up GA4GH.
More than 500 organisations connected to genomics — in healthcare, research, patient advocacy, industry, and beyond — have signed onto the mission and vision of GA4GH as Organisational Members.
These core Organisational Members are genomic data initiatives that have committed resources to guide GA4GH work and pilot our products.
This subset of Organisational Members whose networks or infrastructure align with GA4GH priorities has made a long-term commitment to engaging with our community.
Local and national organisations assign experts to spend at least 30% of their time building GA4GH products.
Anyone working in genomics and related fields is invited to participate in our inclusive community by creating and using new products.
Wondering what GA4GH does? Learn how we find and overcome challenges to expanding responsible genomic data use for the benefit of human health.
Study Groups define needs. Participants survey the landscape of the genomics and health community and determine whether GA4GH can help.
Work Streams create products. Community members join together to develop technical standards, policy frameworks, and policy tools that overcome hurdles to international genomic data use.
GIF solves problems. Organisations in the forum pilot GA4GH products in real-world situations. Along the way, they troubleshoot products, suggest updates, and flag additional needs.
NIF finds challenges and opportunities in genomics at a global scale. National programmes meet to share best practices, avoid incompatabilities, and help translate genomics into benefits for human health.
Communities of Interest find challenges and opportunities in areas such as rare disease, cancer, and infectious disease. Participants pinpoint real-world problems that would benefit from broad data use.
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All GA4GH standards, frameworks, and tools follow the Product Development and Approval Process before being officially adopted.
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Help create new global standards and frameworks for responsible genomic data use.
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22 Mar 2021
Approved by the GA4GH Standards Steering Committee earlier this year, Familial Consent Clauses provide researchers with a typology of relevant sample clauses found in research studies and regulations around the world to guide the drafting of consent forms.
Patients and participants who donate their genomic and related health data for research might not realize how and when such data may be shared (or not) with their own family members. In an effort to streamline the consent development process and make it easier for individuals to understand the issues surrounding familial consent, the GA4GH Regulatory and Ethics Work Stream (REWS) recently developed Familial Consent Clauses. Approved by the GA4GH Standards Steering Committee earlier this year, Familial Consent Clauses provide researchers with a typology of relevant sample clauses found in research studies and regulations around the world to guide the drafting of consent forms. The sample consent language can be adapted across a variety of research and healthcare settings to describe how a patient or participant’s genomic and related health data may be shared with family members.
“For a variety of reasons, patients and research participants may or may not want to share their test results with family members. Familial Consent Clauses help navigate different scenarios in a way that respects familial contexts, individual preferences, and privacy,” said Professor Bartha Maria Knoppers, Director of the Centre of Genomics and Policy at McGill University. Dr. Knoppers co-leads development of the Familial Consent Clauses alongside Megan Doerr of Sage Bionetworks and Susan Wallace of the University of Leicester.
These clauses are based on an international analysis of positions and approaches to familial consents, published last year in The American Journal of Bioethics.1 The study illustrates the diversity of international positions, ranging from deference to an individual’s refusal to warn at-risk family members, to physician discretion, to a legal obligation to communicate with family members. Genetics is necessarily “familial,” and this typology of emerging approaches aims to serve as a resource for countries, institutions, researchers, and healthcare professionals.
The Familial Consent Clauses feeds into an ongoing project from the REWS Consent Task Force, which aims to provide a direct “one-stop” resource and catalogue of template clauses for Driver Projects, national initiatives, clinicians, and researchers that can be adapted across different normative environments and genomic studies. Familial Consent Clauses join the larger GA4GH Consent Toolkit, two of which have already been approved: Consent Clauses for Genomic Research and Consent Clauses for Rare Disease Research. Three more guidance documents are on the way, including: Pediatric Consent Clauses to Genetic Research, Consent Clauses for Large Scale Initiatives, and Clinical Consent Clauses for Genetic Testing.
To contribute and get involved with the REWS Consent Task Force, reach out to rews-coordinator [at] www.ga4gh.org.
1. Knoppers, Bartha Maria, and Kristina Kekesi-Lafrance. “The Genetic Family as Patient?.” The American Journal of Bioethics 20.6 (2020): 77-80. https://doi.org/10.1080/15265161.2020.1754505