Dec. 27, 2021
RIKEN IMS Basic Policy Regarding the Sharing of Human Genome Data
RIKEN IMS Human Genome Data Committee
YAMAMOTO Kazuhiko
SUGANO Sumio
ABURATANI Hiroyuki
MATSUDA Koichi
Piero CARNINCIKOSEKI Haruhiko
NAKAGAWA Hidewaki
SUZUKI Harukazu
OHNO Hiroshi
Since the time of its predecessors—the RIKEN Center for Genomic Medicine(2008-2013) and the RIKEN SNP Research Center (2000-2008) —the RIKEN
Center for Integrated Medical Sciences (RIKEN IMS) has been contributing togenome analysis in cooperation with what is now the AMED B-Cure (Biobank–Construction and Utilization biobank for genomic medicine Realization) Program(formerly BioBank Japan’s MEXT Tailor-made Medical Treatment Program).
Today, we have come to a point where we must consider the direction andtransparency with which we should make the accumulated data available tosociety. To this end, a committee including outside experts was established todiscuss the directions for genomic data generated by RIKEN IMS. The following
is an outline of the Center’s basic policy based on the committee’s discussions.
1. Policy regarding making data publically available
RIKEN IMS policy on genomic data sharing will be in line with the data-sharing
framework being developed by the Institute of Medical Science of the Universityof Tokyo for the BBJ genomic data, as well as the data-sharing guidelines* ofAMED.
While there are various opinions regarding the handling of human genomic datathat differ from that of the BBJ, it is internationally considered desirable for largescale genome research projects to make their data available* at the time of

publication or within two years of data generation. RIKEN IMS will need todeliberate and implement its own policy in this regard.
It should be noted, however, that even within the BBJ framework, the decision onwhat and how much data to make publically available is made by the organization
generating the data. There is some data generated by RIKEN IMS that is currently
not publically available. This includes, in particular, raw data (such as idat files)
and imputation files. The committee recommends that this kind of data should bemade publically available* after a number of years have passed since publicationof the relevant papers and when specifically requested, as long as the user
requesting the data follows the security guidelines set by BBJ.
* The term “publically available” as used in this document refers to any one of the three categories of data set forth in theAMED data-sharing policy for realizing genomic medicine. The three categories are: Unrestricted, openly shared data,restricted openly shared data, and restricted, closed shared data (See https://www.amed.go.jp/content/000073342.pdf).

2. Cloud computing
Cloud computing is becoming essential in the handling of large volumes of dataand in sharing the latest data and analysis technology. Outside of Japan,resources like Genomics England and UK Biobank provide users with cloudbased platforms for human data and its analyses. Within Japan, BBJ is currently
considering the use of external servers while it deliberates moving to a cloudbased platform in its fifth term. AMED is in the process of constructing anacademic cloud data center it has dubbed CANNDs (Controlled shAring ofgeNome and cliNical Datasets) that brings together the datasets of several cloudbased genome centers. Also, the National Institute of Informatics offers aGakuNin Cloud Support Service “to encourage the spread of cloud use atuniversities and research institutions in Japan.” ** While some progress is being
made, there is still a need in Japan to deliberate on how security and stable
management of such cloud-based resources can be guaranteed. There are also
issues with international data-sharing outside of Japan that need to be addressed.
In the future, it is likely that cloud platforms will be constructed that provide
constantly updated data and the kind of computational environment that isneeded to analyze it. Hopefully, such platforms will serve to accelerate theresearch of a variety of users and thereby contribute to society and medicine.
Recognizing that both the confidentiality of personal information and theopenness of science are equally important, RIKEN IMS will continue to work incooperation with BBJ and other organizations in considering how best to releasedata that will contribute to human health and the conquest of disease.
**https://www.nii.ac.jp/en/news/release/2016/0920.html

3. Miscellaneous
RIKEN IMS will establish an internal committee and undertake related measures
to deliberate the above points and formulate specific measures of implementation.