News

News


News, stories, and insights from the forefront of genomic and clinical data sharing.

December 5th 2018
What specific protections apply to health-related, genetic, or biometric data?

In the eyes of the GDPR, not all data are equal. Rather, ‘special categories’ of personal data are given additional protection. In the December 2018 installment of the GDPR Forum Brief, Johan Ordish and Alison Hall of the PHG Foundation discuss those of relevance to the genomics and health community.

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GA4GH Framework now available in Korean — call for more translations!

The GA4GH Regulatory and Ethics WorkStream (REWS) has released a Korean translation of its Framework for Responsible Sharing of Genomic and Health Related Data. Produced by by Hannah Kim and So Yoon Kim of Yonsei University in Seoul, South Korea, the new translation will allow institutions across the region to integrate GA4GH data sharing policy frames within their local contexts.

 

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Guest Post: Putting the "Global" in the Global Alliance for Genomics and Health

Nearly six years ago, 50 colleagues came together in a conference room in New York City to discuss the future of genomics. With delegates from eight different countries, they represented an international, interdisciplinary field of researchers, clinicians, and professionals who knew that massive amounts of data were on the horizon and that a plan was needed to make the most of it all. One thing was clear: the plan needed to be global.

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Comparative analysis reveals a diverse international regulatory landscape for genetic data

In September, members of the GA4GH Regulatory and Ethics Work Stream (REWS) published a special issue of the journal Human Genetics, focused on genomic data sharing. The series of review articles includes an overview of the regulatory frameworks that have come to bear in seven different countries.

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GA4GH releases refget API for accessing genomic reference sequence data

Refget, a new API from the Large Scale Genomics Work Stream retrieves genomic reference sequences using “checksums” — small algorithms that tag a bit of data with an identifier that can be used to verify its integrity.

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To Whom Does the GDPR Apply?

The GDPR has a global territorial reachArticle 3 states that the GDPR applies to the processing of personal data in the context of the activities of an establishment (e.g. office, site) of an organization in the European Economic Area (EEA, which constitutes the 28 EU Member States as well as Iceland, Liechtenstein, and Norway), regardless of whether the processing takes place in the EEA or not.

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GA4GH WES API enables portable genomic analysis

The GA4GH Cloud Work Stream has announced version 1 of its Workflow Execution Service (WES) API — a protocol for running the same genomic data analysis in multiple cloud environments.

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GA4GH and ELIXIR Release Beacon API v1 with increased security measures

ELIXIR and the Global Alliance for Genomics and Health (GA4GH) have announced the release of the Beacon API v1 — a data discovery protocol that allows users to determine the presence or absence of a particular allele in a dataset, without disclosing any further data differentiating the individuals it contains.

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GA4GH 6th Plenary Meeting Report Now

We’re happy to announce that the GA4GH 6th Plenary Meeting Report is now available on our website, complete with session summaries, videos, and slides.

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Human Mutation Special Issue Features ClinGen, a GA4GH Driver Project

A paper published in the October, 2018 special issue of Human Mutation features the ways in which the Clinical Genome Resource (ClinGen) is contributing to GA4GH standards development.

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Human Mutation Special Issue Features ClinGen, a GA4GH Driver Project

A paper published in the October, 2018 special issue of Human Mutation features the ways in which the Clinical Genome Resource (ClinGen) is contributing to GA4GH standards development.

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Can Genomic Data Be Anonymised?

Anonymisation is the irreversible alteration of data so that its human subjects are no longer identifiable. Though this makes it incompatible with longitudinal follow-up, and is therefore generally discouraged in precision medicine, it can be an attractive option to comply with data protection law. Indeed, the GDPR does not regulate anonymised data at all, and insists on keeping data in an identifiable form for no longer than necessary for the purposes for which it is processed.

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GA4GH Announces Open Call for New Driver Projects

GA4GH will select up to five new Driver Projects for 2019, focusing on international genomic data initiatives that can increase the organization’s global representation, have significant scientific merit, and capacity to contribute to GA4GH development efforts.

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GA4GH Announces New Interoperability Standards for Genomic Data Sharing

Three new deliverables from the GA4GH Connect strategic roadmap, released today at the GA4GH 6th Plenary Meeting, address issues of variant discovery, reference sequence harmonisation, and cloud computing.

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A harmonised resource for clinical interpretations of cancer mutations

A new resource developed by the Variant Interpretation for Cancer Consortium (VICC), a GA4GH Driver Project, makes clinical interpretation of variants much more consistent by aggregating known information about mutations associated with non-hereditary cancer.

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Introducing the GA4GH GDPR and International Health Data Sharing Forum

A new task team of the GA4GH Regulatory and Ethics Work Stream, the GDPR and International Health Data Sharing Forum, will begin publish monthly “GDPR Briefs” that answer important questions about the GDPR’s impact on various aspects of international health research and genomic and health-related data sharing, and that further explore the various issues raised in an initial Primer, released on September 4.

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Ten Ways the GDPR Impacts International Health-Related Data Sharing

The General Data Protection Regulation (GDPR), which took full legal effect across the European Union (EU) on 25 May 2018, has a number of implications for international health research involving the collection, use, and cross-border sharing of people’s personal data. Such research includes genomics research.

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Your DNA, Your Say: the “why” and the “how”

In a new video to accompany the recent publication about developing an international survey to gather global attitudes toward genomics, Your DNA Your Say study authors discuss the “why” and the “how” of the survey they built, and the complexities and nuances of translating it into different languages in order to reach as many global lay publics as possible.

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A new access tier for genomic and health-related data

In an article published in the European Journal of Human Genetics, members of the Global Alliance for Genomics and Health (GA4GH) propose a novel “registered access” data access model that aims to increase and improve access to genomic data for use in research.

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Maintaining public trust in use of Big Data for Health Science

In a comment piece for <em>The Lancet Oncology</em>, a collaborative team of international researchers from GA4GH and beyond outlines the imperative for maintaining public trust in the use of health data for research.

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Guest Post: Responsible data sharing in an increasingly open era

The Global Alliance for Genomics and Health (GA4GH) has always prioritized responsible, ethical data sharing. Responsibility and the right to benefit from genomic research are at the heart of everything we do. After recent discussions in the international, mainstream media, this message bears repeating.

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htsget, GA4GH’s streaming API, is a bridge to the future for modern genomic data processing

In an article recently published in the European Journal of Human Genetics, members of the Global Alliance for Genomics and Health (GA4GH) propose a new model for data access termed “registered access.” This tier between open access and controlled access aims to increase and improve access to genomic data for use in research.

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H3Africa Research Framework Builds on work of the GA4GH

The new Framework developed by GA4GH Member organization H3Africa aims to guide ethically responsible biomedical research in Africa and builds on the work of the GA4GH Regulatory and Ethics Work Stream.

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NIH All of Us Program to Implement GA4GH Data Sharing Standards

The All of Us Research Program aims to gather data from one million or more people living in the United States to accelerate research and improve health. It will use GA4GH data sharing standards to ensure its efforts are compatible with similar initiatives around the globe.

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Ethics of Genomic Data Sharing: An Interview with Bartha Maria Knoppers

GA4GH regulatory and ethics lead Bartha Maria Knoppers discusses the Framework for Responsible Sharing of Genomic and Health-Related Data, broad consent, the European General Data Protection Regulation (GDPR), and planned REWS activities for the coming year.

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Guest Post: A message from the GA4GH Chair, April 2018

In the first in a quarterly series of guest blog posts from the GA4GH Chair, @EwanBirney describes the recent structural changes to the organization and the 2018 Strategic Roadmap.

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A brief tribute to Sir John Sulston, champion of open science

As a pioneer in genetics research, a leader in the Human Genome Project, and the founding director of the Wellcome Sanger Institute (a GA4GH Host Institution), Sir John was one of the most vocal champions of the open science mandate upon which our organization was founded—we are deeply indebted to him and to his contributions to the field.

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Interview with David Altshuler: a GA4GH retrospective

Founding GA4GH Chair David Altshuler discusses the organization’s history and the need to enable responsible genomic data sharing — a need he says is even more relevant today than it was five years ago.

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Guest Post: When a newsletter is more than a newsletter

Vivienne Parry, Head of Engagement at Genomics England, discusses the 100,000 Genomes Project Participant Panel and the critical impact its voice has on the activities of the organization.

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Canadian Genomics Cloud to develop GA4GH compliant precision medicine platform

The Canadian Genomics Cloud, a national cloud-based infrastructure for genomics data sharing, will develop an end-to-end software solution that complies with GA4GH standards from the ground up.

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GA4GH Releases 2018 Strategic Roadmap

The Global Alliance for Genomics and Health (GA4GH) has announced a series of more than two dozen deliverables to be launched in 2018 and developed over the next one to three years, laying the groundwork for real-world genomic data sharing by 2022.

The GA4GH 2018 Strategic Roadmap includes the first 28 standards and frameworks to be developed under GA4GH Connect, a new phase of the organization focused on aligning with the key needs of the international genomic data community.

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GA4GH Strikes Formal Collaborations with 15 International Genomic Data Initiatives

The Global Alliance for Genomics and Health (GA4GH) has struck formal collaborations with 15 international genomic data initiatives as 2017 Driver Projects, including Genomics England, Australian Genomics and the U.S. All of Us Research Program. The announcement, made at the GA4GH 5th Plenary Meeting, comes as part of the launch of GA4GH Connect: A 5-year Strategic Plan.

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Public Variant Databases: Data Share with Care

If every individual has millions of unique variants in their DNA, how can clinicians be expected to tease out a handful of disease causing mutations from a haystack of inconsequential variants? To aid their cause, public human genomic variant databases have sprung up to catalog variants that cause (or do not cause) disease.

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A Data Biosphere for Biomedical Research

In an article originally published on Medium the authors describe their vision for building an open, compatible, and secure approach to data within the life sciences research community.

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Data-sharing brings hope to rare disease patients around the globe

Justin Vachon was born in 1997 with a neurological disorder so rare it had never been seen in a Canadian clinic before. His family had to wait until 2016 for the genetic underpinnings for his disorder to be identified.

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GA4GH Membership Reaches 500 Organizations

The Global Alliance for Genomics and Health (GA4GH) welcomed its 500th Organizational Member this week, solidifying its role as the international standards setting body for genomic and health-related data.

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Francis Collins and Harold Varmus to speak at GA4GH 5th Plenary Meeting

Francis Collins and Harold Varmus will be at the GA4GH 5th Plenary Meeting in Orlando, Florida to help launch the organization’s 5-year strategic plan on October 17, 2017. Drs. Varmus and Collins, who are both members of the GA4GH Strategic Advisory Board and hold a legacy of commitment to the organization’s mission, will also discuss the importance of international open science following the launch event.

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GA4GH in 2022

GA4GH leaders and key participants recently came together at the Wellcome Trust Genome Campus in Hinxton, UK to discuss a strategic plan for the organization over the next five years.

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Share the Data to Save Lives: a global cure for a global disease

In a perspective paper published in the New England Journal of Medicine (NEJM), members of the Global Alliance for Genomics and Health (GA4GH) Clinical Cancer Genome Task Team call on the international community to put more resources – people, data, infrastructure and policy change – toward cancer genomic data sharing.

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New strategies for securing Beacon datasets

In a paper recently published in the Journal of the American Medical Information Association, a team of GA4GH security experts put forth three new strategies for mitigating the risks of cyber attacks on Beacon datasets.

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We want to hear from you!

If you have used a GA4GH product or data sharing exchange in your research or clinical practice, we would love to hear about its impact.

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Video: BRCA Exchange now contains more than 17,900 variants

The BRCA Exchange aims to advance our understanding of the genetic basis of breast cancer, ovarian cancer and other diseases by pooling data on BRCA1/2 genetic variants and corresponding clinical data from around the world

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GA4GH and others call for an international coalition of data resources

In a Correspondence to Nature Magazine released this week, GA4GH Executive Director Peter Goodhand and other members of the Global Life Sciences Data Resources (GLSDR) Working Group call for a global coalition of data resources that would ensure important life sciences data remain freely available to the scientific community well into the future.

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Greater than the sum of its parts: How Matchmaker Exchange is being used to solve today's hardest rare disease cases

Patient A:II-1 was born in the Netherlands three weeks early with short, flattened bones in her upper body. She seemed otherwise healthy until her horseshoe-shaped kidneys began to fail.

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Greater than the sum of its parts: How Matchmaker Exchange is being used to solve today's hardest rare disease cases

Patient A:II-1 was born in the Netherlands three weeks early with short, flattened bones in her upper body. She seemed otherwise healthy until her horseshoe-shaped kidneys began to fail.

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GA4GH at AAAS 2017

In February 2017, GA4GH hosted a symposium in the Medical Sciences and Public Health track of the 2017 Annual Meeting of the American Association for the Advancement of Science (AAAS).

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Beacon Goes Global

Almost sixty percent of the human population resides in Asia and Africa, but only a fraction of the world’s human genomic sequencing efforts cover that community. That’s more than 4 billion individuals whose genomes are not well represented by current sequencing efforts, placing them squarely outside the promise of precision medicine.

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Ethics Review Recognition Policy makes sharing international research data easier

The GA4GH Regulatory and Ethics Working Group (REWG) has published a new policy online developed by its Ethics Review Equivalency Task Team.

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Policy recommendations for sharing data in the US Cancer Moonshot project

In his 2016 State of the Union Address, former U.S. president Barack Obama announced a “Cancer Moonshot” project to dramatically accelerate cancer research and improved prevention, diagnosis, and treatment efforts.

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ELIXIR and GA4GH Beacon Team Up to Advance Genomic Data Sharing

The Beacon Project of the Global Alliance for Genomics and Health (GA4GH) and ELIXIR, the European infrastructure for life-science data, announced today an expansion of their partnership  to improve the discoverability of European genomic data.

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Genomic data sharing on the silver screen

Back in May 2016, the GA4GH Participant Values task team launched a global research study to probe public attitudes toward sharing DNA and medical data. The project, Your DNA, Your Say, is unique in its delivery.

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Five challenges to open science around the globe

Last week, Big Data 2 Knowledge (BD2K) held its annual all hands 2-day meeting, followed by a 1-day public symposium on open data science.  BD2K is an initiative of the US National Institutes of Health (NIH) aimed at turning “biomedical research into a digital enterprise.”

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Global Alliance for Genomics and Health Unveils New Genomics API Allowing for Seamless Sharing of Genetic Data

The Global Alliance for Genomics and Health (GA4GH) today announced a new Application Programming Interface (API) developed by the Global Alliance’s Data Working Group that will allow DNA data providers and consumers to better share information and work together on a global scale.

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Ewan Birney to lead Global Alliance

The Global Alliance for Genomics in Health (GA4GH) has appointed Ewan Birney PhD, Director of the European Bioinformatics Institute (EMBL-EBI) and nonexecutive Director of Genomics England, to lead the consortium’s efforts to accelerate medical and research advancements through the responsible sharing of genomic and clinical data. Birney will assume the new role on 1 November.

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Welcome to the GA4GH News Site

We at the Global Alliance for Genomics and Health are serious about our mission of transforming medicine and improving human health through data sharing. Since our founding in 2013, GA4GH has expanded the global conversation about genomics and health in many ways. We convene stakeholders with expertise in genomics, security, regulations and ethics, informatics, computing, and clinical genetics.

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GA4GH presents vision, model for genomic and clinical data sharing

In today’s Science, the Global Alliance for Genomics and Health (GA4GH) calls for a federated data ecosystem for sharing genomic and clinical data. The diverse authorship, which includes international leaders in academia, research, medicine, and industry, argues that a common framework of principles, protocols, and interoperable technical systems are necessary to enable responsible and effective data sharing.

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Closing the Evidence Gap on Public Attitudes Toward Genetic Data Handling

The Global Alliance for Genomics and Health (GA4GH) and the Wellcome Genome Campus have launched a new project to explore global public attitudes and beliefs around the sharing of genetic information.

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Big Data saves lives, say cancer experts

A recent paper from the Global Alliance for Genomics and Health (GA4GH) highlights the potential of “big data” to unlock the secrets inside cancer cells and enable the development of more effective personalised treatments.

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BRCA Exchange aggregates publicly accessible BRCA1 & BRCA2 variants

The BRCA Challenge, a Demonstration Project of the Global Alliance for Genomics and Health(GA4GH), will release the newest version of the BRCA Exchange web portal on April 3, 2016 in advance of the annual meeting of the International Congress of Human Genetics (ICHG) in Kyoto, Japan.

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BRCA Exchange aggregates publicly accessible BRCA1 & BRCA2 variants

The BRCA Challenge, a Demonstration Project of the Global Alliance for Genomics and Health(GA4GH), will release the newest version of the BRCA Exchange web portal on April 3, 2016 in advance of the annual meeting of the International Congress of Human Genetics (ICHG) in Kyoto, Japan.

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GA4GH to explore engagement opportunities for global data sharing at ICHG 2016 annual meeting

On April 3, 2016, GA4GH hosted a global engagement workshop to coincide with the Annual Meeting of the International Congress of Human Genetics (ICHG). Additionally, a joint session with the International Rare Diseases Research Consortium (IRDiRC) was held during the main body of the conference on April 6.

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Developing ethics review mutual recognition for data-intensive international research

Genomic research holds great potential to advance human health and medicine. However, for the millions of data points now being collected through large-scale sequencing efforts to be truly valuable, they must be analyzed in aggregate and shared across institutions and jurisdictions.

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Global Alliance for Genomics and Health Marks Two Years of Progress

The Global Alliance for Genomics and Health (GA4GH), an international coalition dedicated to improving human health by maximizing the potential of genomic medicine, marked its second anniversary this month.

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Global Alliance for Genomics and Health Members Meet to Advance Genomic Data Sharing

The Global Alliance for Genomics and Health convened its second major meeting of 2014 today, bringing together more than 250 international leaders to collaborate on the development of innovative solutions to accelerate sharing of genomic and clinical data. At their plenary meeting, held in San Diego, California, Alliance members shared progress to date and discussed next steps for the effort.

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Global Genes™ Honors Work of the Global Alliance for Genomics and Health

The work of the Global Alliance for Genomics and Health (GA4GH) was recognized at the 3rd Annual Tribute to Champions of Hope Gala of Global Genes™, an event honoring those who are leading the fight against rare disease.

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New pan-Canadian program to accelerate data sharing objectives of the Global Alliance for Genomics and Health

Genome Canada and the Canadian Institutes of Health Research (CIHR) today announced a $3.3 million investment in Can­SHARE – a pan­Canadian program that will enable innovation in the use of genomic data for health care for patients in Canada and worldwide.

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Beacon Project Mitigates Privacy Risks While Maximizing Value of Responsible Data Sharing

The Beacon Project is one of three data sharing demonstration projects of the Global Alliance for Genomics and Health (GA4GH). It is an effort to enable international sites to share genetic data to improve human health in the simplest of technical contexts. It is based on a yes/no query that tells searchers whether a specific genetic variant is contained in a participating database.

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

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.

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