Principle for the Access of Human Genetic Resource Data in NGDC

Rapid developing sequencing technology continuously promotes the huge production of the human genetic resources data, which eagerly needs a data sharing policy to effectively manage and protect Chinese human genetics resources for the positively data sharing and rational utilization in China. In this background, the National Genomics Data Center (NGDC) made this policy according to the Method of Scientific Data Management and the Regulation on the Management of Human Genetic Resources of the People’s Republic of China.

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Applicability

This policy is mainly applicable to the submission and access of human genetic resource information funded by public grants, including data files and related metadata information. The OMIX Database of NGDC can undertake for the collective management and access of human genetic resource information. There are two modes of data access for human genetic resource data in OMIX, namely Open Access and Controlled Access. The Open-Access data can be downloaded and used directly, while the Controlled-Access data can only be acquired after applying to the original data submitter and getting authorized.

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Data Submission

Rights of data submitter

1. The data submitter has the right to restrict the specific usage of the submitted data and related metadata of China’s human genetic resources acquired in accordance with ethics.
2. The data submitter has the right to Agree or Disagree for the applicants of the data access and usage.

Responsibilities of data submitter

1. The data submitter is the person responsible for the dataset submitted. Before submitting to OMIX, the following conditions must be reached:
• the informed consent has been achieved from corresponding research objectives (with inform of the collection purpose and usage, possible influence to health, privacy protection measure, and the right to participate voluntarily and quit unconditionally [1]), in accordance with ethics and has passed ethic review;
• the dataset submission and access has obtained the written agreement of corresponding research objectives, and has been approved by the ethics review committee of the data submitter’s organization.
2. The information provided by the data submitter must replace or delete the complete or partial personal information of the human genetic resource provider(s).
3. The data submitter must fulfill all the necessary metadata information and complete all the submission steps online as required in the OMIX webpage, and make sure that the information is complete and accurate. The dataset and any necessary appendix should be provided.
4. For Controlled Access data in OMIX, the data submitter should response the applications for the data access and usage in a timely manner.
5. For the release of the dataset, the data submitter should obtain the record number of the related dataset under the “Open Access” Category in the Administration Service Platform of the Ministry of Science and Technology of the People’s Republic of China, which is required by the Regulation on the Management of Human Genetic Resources of the People’s Republic of China.
6. In case that the related dataset is inconsistent with the legal regulations, or any data with intentionally or unintentionally error is found, the data submitter should contact NGDC immediately and pause the related data access and release. The data submitter must re-upload the data in accordance with the legal regulations or the corrected data in a certain time, otherwise NGDC will cancel the original data numbers.
7. In case that the corresponding research objectives of the submitted dataset refuse to the data access or quit the ongoing research program, the data submitter should inform NGDC and handle the data in time and stop the subsequent use of the data.

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Data Download and Usage

Rights of data user

1. The data user can make applications for the data needed through the OMIX system.
2. The data user can download the data in certain time after obtaining the approval of accessing the dataset.
3. The data user has the intellectual property of the subsequent research result based on the dataset.
4. The data user can download the approved data by tools like FTP or HTTP.

Responsibilities of data user

1. The data user should use the downloaded dataset in the promised research scope of application. The dataset is restricted to research purpose, and can only be used for the research group and its research collaborators. Dataset distribution to other person is not allowed and cannot be used to identify individuals.
2. The data user should verify the quality, content and scientific validity of the downloaded dataset by his/her own.
3. If the data user publish a paper using the downloaded dataset from OMIX, the data accession number must be indicated in the paper with the note that the data can be acquired from OMIX.
4. The data user must take full responsibility of the data usage (including third-party responsibility). The data user should be aware that, in case there are questions of data management and process, the responsibility will be extended to the head of his/her organization/affiliation.
5. The data user must guarantee the safe use of the dataset. In case there are incidents of data divulgence, the data user must cut off the network connection of related device immediately and inform NGDC, and then conduct remediation measures following the instructions of NGDC.
6. In case that the corresponding research objectives of the downloaded dataset quit the ongoing research program, the data user should stop using the dataset immediately and should not use it hereafter.
7. The data user should be aware that NGDC may use some public information for database statistic purposes. The public information includes by not limited to the dataset ID, name of the data user and affiliation, period of data usage, and the research program.