How do biobanks protect privacy?
There are a number of steps taken to protect the privacy of people who donate to biobanks. This includes the de-identification of samples. That means that even researchers will not know the name of samples they are looking at:
• Samples would only be labeled by a code. There would be a person who kept the code but they would not have access to certain information or health records.
• Researchers who have access to genetic or medical information would not be able to identify whom the sample belonged to and they would not know the participant’s names.
• Health or medical information would be stored separately on computers that are not connected to the internet or any networks so it cannot be accessed by any unauthorised persons.
If a sample belonged to you, and a researcher had information that you needed to know, the biobank employee keeping the code safe could re-identify the sample and contact you.
What can go wrong?
It is possible that the information could be identified and traced back to you. But this is rare and only happens in unusual situations:
• If a court orders that information be identified as a result of a criminal investigation. In this situation, the biobank must comply with the court order and identify who the sample belongs to.
• Where research has uncovered that the person who donated the sample is at risk of a serious illness or health problem.
• Other unusual or rare situations.