People have the right to decide who have access to their information and how information about them will be used. You should not access, collect or use people’s information without properly informing them about why you need to do so and getting their permission.
Note that what constitutes ‘public’ or ‘private / personal’ information is context-dependent. Even if you are collecting publically available information (for example, observing how people behave in public or on social media), people may still consider your action as intrusive upon their privacy if you do not seek consent.
If you are conducting retrospective research using only existing databases or samples in biobanks, you should seek permission from the custodians of these data or samples (usually the medical records or pathology department). The custodian should check your usage requirements against subjects’ initial consents to avoid improper use. You may be asked to contact individual subjects to seek further consent. (6)
2. Process the minimum amount necessary →
The World Medical Association. WMA Declaration of Taipei on Ethical Considerations regarding Health Databases and Biobanks [Internet]. 2017 [cited 2019 Feb 1]. Available from: https://www.wma.net/policies-post/wma-declaration-of-taipei-on-ethical-considerations-regarding-health-databases-and-biobanks/