Working practices in NBIS support projects with human data

Background

NBIS experts frequently engage in projects handling omics (and other) data derived from humans. Such data are typically legally considered sensitive personal data, and there are specific laws and regulations for how such data should be handled. Below is some information as well as practical guidelines on how NBIS experts should work with sensitive personal data, and what is expected from the project Principal Investigator (PI).

The reasoning behind these guidelines and references to relevant sections of the legislation are described in more detail on the human data legal reference page.

Disclaimer!
The PI, as well as everyone with access to sensitive personal data, are responsible for following current laws and regulations, and NBIS will not assume legal responsibility for advice provided in these guidelines.

What is sensitive personal data?
Who is responsible for the data?
Ethical permits and Informed consents
How do NBIS experts access and analyse sensitive personal data?

NOTE! Not all researchers can yet immediately use Bianca, due to lack of central contracts (“personuppgiftsbiträdesavtal”) between the Swedish universities. Central contracts are being worked on and will hopefully be signed during the spring 2018. In urgent cases, contact UPPMAX/SNIC to set up a contract for your particular study (office@snic.se).

How do I publish sensitive personal data?

References

GDPR

Information about the GDPR

Further questions

If you have further questions regarding sensitive personal data, you are welcome to contact the NBIS data manager (data@nbis.se).