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Global Effort Planned to Improve Availability of Genomic Data

NEW YORK (GenomeWeb News) – A number of the world's major biomedical research organizations have struck a plan to create a global alliance to make genomic and clinical data more usable, accessible, and secure.

Under the plan, which aims to bring genomic medicine to the realization of its potential, around 70 research, healthcare, and patient advocacy organizations — including the US National Institutes of Health, the Wellcome Trust, BGI-Shenzhen, and Genome Canada — have signed a letter of intent to join the effort and to adopt a set of core principles that will guide the project, which is outlined in a new white paper.

Their goal will be to create a non-profit alliance that will develop a common framework of international technology and practice standards that will help make the sharing of genomic and clinical data from sources around the world better, easier to interpret, and safer.

The partners have committed to supporting the creation of open technology standards that will be used to develop interoperable information technology platforms that will enable users to share and learn from data stored by other institutes spread across six continents.

The idea for the alliance was conceived at a meeting of about 50 people from an international group of genomic medicine organizations in New York City in January. At the meeting, it became apparent that one of the best ways to advance genomic medicine would be to enable investigators to access as much data as possible, including clinical data, Ontario Cancer Institute for Cancer Research President and Scientific Director Tom Hudson told GenomeWeb Daily News today.

Currently, the alliance is in the planning phases. An organizing committee has been named and the problems, principles, and goals have been laid out in the white paper. The paper is now being circulated more widely as the committee searches for more partners to join the initiative, said Hudson, who is also a member of the committee.

Eventually, the alliance will consist of partner organizations, including nonprofit and for-profit groups from a range of sectors, including genomic technology groups, such as sequencing companies, and information technology partners.

The core principles that the partners have signed on to support include respect for data sharing and privacy preferences of participants; transparency of governance and operations; accountability for best practices in technology, ethics, and public outreach; inclusivity and trust among stakeholders; collaboration and data sharing; developing an ecosystem that accelerates progress; and agility, or being able to swiftly benefit those with diseases.

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