Any health information that the biobank provides to researchers is de-identified. This means that the information does not contain a donor's name, social security number, email or physical address, birthday, or any other information that would allow the researcher to easily identify a donor. 

​

Here's an example of how de-identification works. Suppose a researcher is running a study that looks at how age, weight, and smoking status have an impact on cholesterol levels. They contact the biobank and ask for biological samples, but they'll also need some health information about the donors who provided these samples. In particular, they'll need to know the age, weight, and smoking status of each of these donors. 

​

To gather this information for the researcher, a member of the biobank team will pull age, weight, and smoking status from the donors' medical records. They'll compile this information into a spreadsheet that might look something like this:

​

​

​

​

 

 

​

However, this list contains identifiable information, such as the donor's name and birthdate. This identifiable information must be removed from the spreadsheet before it is sent along to the researcher. The biobank will remove this information, creating a de-identified spreadsheet that can then be sent to the researcher. This spreadsheet will look something like this:

​​

​​

​

​

​

​

 

So, While the biobank can link samples to their respective donors, researchers who access samples and data cannot identify those donors. Any data shared with researchers is stripped of information that could potentially reveal donor identities.​​