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What is a Biobank?
Biobanks contain biological samples
and often
the data derived from them.
A biobank can contain…
blood
tissues…like tumors
DNA
health information
What about personal information:
birth date
self-reported race?
sex
Yes!
Biobanks are accessed by many people
Many researchers at many institutions
Many researchers at many biotech companies
Research using biobanks is not related
to
stem cell research
human cloning
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
Data given to researchers can (often) be linked back to the
primary biobank source
Can researchers tell where the data comes from?
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…
How are they linked back to the biobank?
Using an anonymous identifier
randomly assigned
to each unique person
like “E129Y472J95’
Biobanks are often called…
Biorepositories
Biotrusts
Large cohort studies
Biolibraries
These are each similar but not quite the same.