Around 100 Researchers from Japan and around the world gather to attend the AMED-GA4GH GEM Japan workshop 2019 Sendai

Around 100 researchers working in genomic medical research and development and in healthcare traveled to Sendai, the City of Trees, to take part in the 4-day AMED-GA4GH GEM Japan workshop 2019 Sendai from March 18 to 21.

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photo1:Participants listen to speakers during the symposium.

photo2:the GA4GH Chief Executive Officer Peter Goodhand.















The Global Alliance for Genomics and Health (GA4GH) is an international, nonprofit alliance formed in 2013. The GA4GH community is working together to create frameworks and standards to enable the responsible, voluntary, and secure sharing of genomic and health-related data. All of our work builds upon the Framework for Responsible Sharing of Genomic and Health-Related Data. As of 2019, the nonprofit alliance is a global network involving 71 countries, and more than 500 organizational members. Fifteen of these organizations come from Japan, including the Japan Agency for Research and Development (AMED), which became a member in 2016.

As part of its 5-Year Strategic Plan, members are working on developing foundational Technical Work Stream standards, and carrying out Real-World Driver Projects in order to drive genomic data sharing.

Several Driver Projects are currently being carried out under the GA4GH, including AMED's Genome Medical Alliance Japan (GEM Japan), which became Asia's first designated driver project in March 2019.

GEM Japan is proceeded with Program for an Integrated Database of Clinical and Genomic Information, Platform Program for Promotion of Genome Medicine, BioBank Japan Project for Genomic and Clinical Research, Tohoku Medical Megabank Project, plans to share the allele frequencies as well as disease variations of Japanese population and to hold GEM Japan workshops in a challenge of localization of the GA4GH tools into non-English speaking country.

In the future, the project plans to make information about gene frequency in the Japanese population based on the whole Japanese genome analysis, and Japanese disease variant information, available on the public domain. (See AMED press release published 2 February, 2019)
The GA4GH workshop was part of the GEM Japan project's activities. Hosted by Professor Kenjiro Koseki's Program for an Integrated Database of Clinical and Genomic Information, the workshop's intention was to come to a mutual understanding amongst researchers within and outside of Japan regarding data sharing of genomic data, and to drive discussion between technicians and researchers involved in this project.

The workshop was split into two parts. The first day involved a symposium at the Tohoku Medical Megabuck Organization at Tohoku University, while the workshop was carried out on the second, third, and fourth days in Akiu, together with the GA4GH foundational and technical developers.

At the opening of the March 18 symposium, participants were informed of the current situation in Japan (photo 1), and overseas. This was followed by several talks introducing projects in Japan, beginning with an introduction of GEM Japan by Hidewaki Nakagawa (RIKEN), IRUD by Kenjiro Kosaki (Keio University), MGeND by Katsushi Tokunaga (University of Tokyo), and Tohoku Medical Megabank Organization plan by Kengo Kinoshita (Tohoku University). The next talks were by the GA4GH members who introduced the various activities at GA4GH, including an overview by the GA4GH Chief Executive Officer Peter Goodhand (photo 2), followed by talks by Robert Freimuth, Larry Babb, Reece Hart, and Alex Wagner.

In the break time, more than 40 participants took part in a site tour of the Tohoku Medical Megabank Organization (photo 3).

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photo 3:Participants take part in the site tour of the Tohoku Medical Megabank Organization.

During the two-and-a-half-day workshop that followed the symposium, participants were split into four working groups (Genomic Knowledge Standards, Clinical & Phenotypic Data Capture, Cloud/Grid, and Data Use & Research Identities), and engaged in lively discussions. The contents of each group's work was made available on the web, with participants providing valuable opinions from their respective fields of expertise. The workshop was more like a study camp, with participants engaging in discussion well into the night, which also helped to strengthen professional networks. On the final day, each group presented their discussion results. During the workshop, the participants were able to experience the value of discussion, being transparent, and engaging with other technicians and researchers working in fields different from their own.

For the participants from overseas, the workshop proved to be an opportunity to learn about their Japanese professionals, and take part in discussion with the Japanese teams for the first time.

"Being able to engage in direct conversation with Japanese colleagues was most valuable," said Peter Goodhand.

"By participating in this workshop, we are able to see how much progress has been made in Japan's activities. In Japan, a Nationwide hub is formed on the basis of organization-specific and purpose-specific activities, which are linked to the activities of international frameworks such as the GA4GH. In this way, I think that it is very useful to weave the issues of various levels hierarchically," said Melanie Courtot

Soichi Ogishima (Tohoku University), the GA4GH workshop organizer, said "I think it was a very active workshop. I truly appreciate all participants who traveled from within Japan and from abroad to engage in many face-to-face discussions.

By the end of the retreat, we were able to outline general action items, and get an idea of how to achieve them." (speaker in photo 4).

In this workshop, we were able to share a common understanding among stakeholders in Japan regarding the GEM Japan project. The future activity of the professionals concerned is expected.


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▲photo 4:Participants take part in the workshop.

▲photo 5:Participants split into group discussions during the workshop.