Data Protection Policies

Hello,

You have been identified as someone who may be accessing protected dbGaP data within HuBMAP.

Please be sure you are aware of, and adhere to the following policies based off of the recommended best practices from NIH.

The main points and considerations are:

For those NOT generating or conducting research with these data

  • It Is advised not to copy protected data off of the system; if data must be copied to portable media(i.e. laptop), it must be encrypted at rest as per CMU's Policy and NIH Security Best Practices on dbGaP protected data;
  • Protecting data confidentiality;
  • Following, as appropriate, all applicable national, tribal, and state laws and regulations, as well as relevant institutional policies and procedures for handling genomic data;
  • Not attempting to identify individual participants from whom the data were obtained;
  • Not selling any of the data obtained from NIH-designated data repositories;
  • Not sharing any of the data obtained from controlled-access NIH-designated data repositories with individuals other than those listed in the data access request;
  • Agreeing to report any violation of the GDS Policy to the appropriate DAC(s) as soon as it is discovered

For those who ARE generating or conducting research with these data, the following ADDITIONAL considerations apply:

  • Agreeing to the listing of a summary of approved research uses in dbGaP along with the investigator’s name and organizational affiliation;
  • Using the data only for the approved research;
  • Reporting research progress using controlled-access datasets through annual access renewal requests or project close-out reports;
  • Acknowledging in all oral or written presentations, disclosures, or publications the contributing investigator(s) who conducted the original study, the funding organization(s) that supported the work, the specific dataset(s) and applicable accession number(s), and the NIH-designated data repositories through which the investigator accessed any data

Please reply to us with confirmation that you have reviewed and agree to the guidelines in these documents.

Please let us know if you have any questions or concerns.

Thanks,

HuBMAP Security Team


 

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