Data Protection & Security

Please note that FinnGen has important health and genetic information about people. Ensuring the security of this data is utmost priority to everyone in the FinnGen Consortium!

If you have questions or concerns about data protection please be in contact FinnGen Data Protection Officer:

• email [e-mail]

• phone: [phone]

Data Security Training

To access the individual level data in the Sandbox, you are required to take a data security exam once a year. This is to make sure the data related to the study subjects is not mishandled.

In the following videos, a researcher called Individual Jones will guide you through the basic structure of the Sandbox, the data content and how data security is handled.

Video 1: FinnGen is a research project (3.31 min)

• The aims of the FinnGen research project

• FinnGen genotype and phenotype data basic

Video 2: Data structure and access levels (5.18 min)

• Where to find the data in the Sandbox

• How to download results from the Sandbox

• How to share your data and results with other organizations

Video 3: Basics of personal data and individual level data (6.21 min)

• What is personal data and individual level data

• How and why data is pseudonymised

• When data is anonymised

• How the Sandbox and data is protected

• How you can protect the data

• The different types of FinnGen analysis and processes related to them

Part 4: Why it is safe to do analysis in the Sandbox (5.14 min)

• How the Sandbox and data is protected

• How you can protect the data

• The different types of FinnGen analysis and processes related to them

Data Security Exam

Once you have watched the videos you may proceeds to the Data Security Exam (login with finngen.fi account). To pass, you must answer all questions correctly. After submitting the answers check your score and if you did not get all answers right, review the training materials and try again. Note that some questions have multiple correct answers, and you should select all applicable options.

Data Breach reporting

If you suspect a data breach, report immediately:

• Online reporting form (link also in the members’ area)

• Or contacting directly our DPO

Examples of data breaches:

• green account holders having access to any individual-level (red) data

• any individual-level (red) data outside FinnGen Sandbox

• sharing individual level data in the presentations/manuscripts etc. (note, FGIDs are considered red data).

If you lose your @finngen.fi-credentials, or suspect that they have been compromised, please immediately contact [e-mail].

Contact the servicedesk also when you no longer need your account.