Principles of Human Genetic Resource Data in NGDC

The GSA-Human is designated for the collective management and access of human genetic resource information. Rapid developing sequencing technology continuously promotes the huge production of the sequencing data on human genetic resources,

Rights of data submitter

1. The data submitter has the right to restrict the specific usage of the submitted raw sequencing data and related metadata of China’s human genetic resources acquired in accordance with ethics.

2. The data submitter can set the time of dataset access and release, even if the related research result has been published or the intellectual property has been obtained. The detailed release conditions should be decided with consensus of the data access committee (DAC) of the data submitter.

3. The data submitter and the DAC have the right to Agree or Disagree for the applicants of the data access and usage.

Rights of data submitter

1. The data submitter is the person responsible for the dataset submitted, which should be the group leader. Before submitting to GSA-Human, the following conditions must be reached: (1) 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; (2) 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 GSA-Human webpage, and make sure that the information is complete and accurate. The dataset and any necessary appendix (e.g. the quality control information) should be provided.

4. The default mode of the data submitted to GSA-Human is Controlled Access. The data submitter should organize a DAC and designate corresponding person. The DAC 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.

Rights of data user

1. The data user can make applications for the data needed through the GSA-Human 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 via FTP, which is designated by GSA-Human.

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 GSA-Human, the data accession number must be indicated in the paper with the note that the data can be acquired from GSA-Human.

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.

[1] Regulation on the Management of Human Genetic Resources of the People’s Republic of China. Approved by the 41st Standing Meeting of the State Council of PRC on March 20, 2019, and has been implemented from July 1, 2019.