Biobanks contain biological samples and associated health data that are accessed by researchers studying diseases. They may contain blood, tissues, DNA, and personal information like birthdate and sex. Oversight of biobanks is negotiated between the biobank and research institutions, funders, and ethics boards to ensure samples and data are used appropriately and that individuals can withdraw consent if desired. Researchers are linked to biobank data through anonymous identifiers so samples can be traced, questions answered, and data shared back with the biobank.

1. What is a Biobank?

2. Biobanks contain biological samples and often the data derived from them.

3. A biobank can contain… blood tissues…like tumors DNA health information

4. What about personal information: birth date self-reported race? sex Yes!

5. Biobanks are accessed by many people Many researchers at many institutions Many researchers at many biotech companies

6. Research using biobanks is not related to stem cell research human cloning

7. Oversight and responsibility for the biological samples and data are negotiated between the biobank and... Research institutions and their researchers Funding bodies (National Institute of Health) Ethics boards (Institutional Review Boards) Local, state, national, and international legislatures

8. Data given to researchers can (often) be linked back to the primary biobank source Can researchers tell where the data comes from?

9. Why are they linked back to the biobank? In case the researcher has questions about the biological sample So the data generated by the researcher can be given back to the biobank (to the collective) In case someone wants their sample removed from the biobank To keep track of the samples…

10. How are they linked back to the biobank? Using an anonymous identifier randomly assigned to each unique person like “E129Y472J95’

11. Biobanks are often called… Biorepositories Biotrusts Large cohort studies Biolibraries These are each similar but not quite the same .