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Privacy and autonomy
Researchers at University Medical Centres (UMCs) should pay careful attention to the privacy and autonomy of the people involved in their research. Check the privacy policy of your UMC and use the GDPR-compliant IT infrastructure that it offers.
People can participate in medical scientific research as study subjects (direct participation) or by giving consent to using their healthcare data (indirect participation). When your research data contains personal data, it has to be GDPR-compliant (in Dutch: AVG).
Be sure that in any case, you work according to laws and regulations, you actively inform the participants and that a procedure is in place to guarantee that people actually have a say. [BJ(1] In most cases, you are obliged to ask people for permission to use their personal data in your specific research project.
This third section of HANDS addresses several topics related to privacy and autonomy of people involved in medical scientific research at the Dutch UMCs: informed consent, the difference between the care and research environment, anonymisation and pseudonymisation.
For those that wish to learn more, the Declaration of Taipei, by the World Medical Association, is the leading statement on ethical considerations regarding health databases and biobanks.