28 March 2016
KYOTO, JAPAN (March 28, 2016) — The Global Alliance for Genomics and Health (GA4GH) is a community of individuals and world-leading organizations working together to create interoperable tools and approaches to enable genomic and clinical data sharing. On April 3, 2016, GA4GH will host 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) will be held during the main body of the conference on April 6.
“The GA4GH is committed to enabling global sharing of genomic and health related data, but we cannot do this without engagement of the entire international community,” said Peter Goodhand, GA4GH executive director. “The activities at ICHG will give us an opportunity to demonstrate how we plan to achieve our mission and to enlist wider global participation — an absolutely critical step for us to be successful.”
The workshop on April 3 will include presentations from more than a dozen notable speakers in the field of genomic medicine, including Eric Lander of the Broad Institute of MIT and Harvard (Cambridge, US), Makoto Suematsu of the Japan Agency for Medical Research and Development (Tokyo, Japan), and Sharon Terry of the Genetic Alliance (Washington DC, US). Attendees will learn about progress and current state of the GA4GH as an organization, as well as obtain insight from the Japanese and global perspectives through presentations from six regional initiatives, including a presentation from Masayuki Yamamoto of Tohoku University (Sendai, Japan). The full speaker list and agenda can be found on the event website, where interested parties can also register for the free workshop. Attendance at the main ICHG conference is not required for the workshop.
“The Japanese community is actively engaging in a variety of genomic data sharing activities,” said Kazuto Kato, a professor at Osaka University (Osaka, Japan) and a member of the GA4GH Steering Committee. “These efforts to share data across national and institutional boundaries come with a series of regulatory and ethical challenges in addition to the not insignificant technical issues. This workshop provides an opportunity to tackle those questions through conversations with a globally diverse set of leaders and participants.”
The meeting will provide a tremendous opportunity to strengthen global engagement and participation in genomic data sharing through the GA4GH. The researchers, clinicians, patient advocates, and industry members who make up this community are working together to create the tools and approaches necessary for global genomic data sharing. For instance, the Genomics API provides technical standards for interoperable exchange of information between genomic data providers and consumers and allows them to work together on a global scale to advance genome research and clinical application. The Framework for Responsible Sharing of Genomic and Health Related Data has been translated into 12 languages including Japanese and offers foundational principles and core elements for responsible data sharing guided by human rights, including privacy, non-discrimination, and procedural fairness. Several opportunities already exist for the global community to get involved with these and other activities through, including participation in any of the GA4GH working groups or demonstration projects. For more information on all of these activities, please visit our website.
The Global Alliance for Genomics and Health is an international, non-profit alliance formed to accelerate the potential of genomic medicine to advance human health. Bringing together over 350 leading organizations working in healthcare, research, disease and patient advocacy, life science, and information technology, GA4GH Members are working together to create a common framework of tools, methods, and harmonized approaches and supporting demonstration projects to enable the responsible, voluntary, and secure sharing of genomic and clinical data. Learn more at: http://genomicsandhealth.org.