Inside the Indiana Biobank

Yes, researchers must fill out sample requests explaining how they would use the biological samples and information from the biobank. If that sample request is approved, the biobank will release the samples and linked information to the researcher.

Your participation is completely voluntary, and you may withdraw your consent any time. Any research data already obtained will remain part of the research that has been conducted.

Depending on the way the sample is processed tissue samples can be embedded in paraffin, that makes them shelf stable, you can just leave them like kind of at room temperature and everything, but it sort of limits the types of things you can do with them. There is also a process where the sample can be frozen. And then with blood, and we separate out the different blood components. There are samples that can be divided as many as 12 different ways and that's for distinct research projects, not including reusing data from other projects.

The biobank won’t return test results or medical diagnoses to you. However, sometimes research may find something important about your health—like a higher risk for a certain condition. If that happens, the biobank might contact you to see if you want to learn about it. You can always say no. ​ They will not contact you if: ​ 1. Your sample hasn’t been tested for that information. 2. Your sample was tested but nothing was found. 3. Researchers decided not to share those results.

All research involving human biological samples requires an ethics review. In some situations the biobank itself needs ethics approval. Biobanks apply for ethics review commonly at the institutional level. The ethical and privacy laws that shape the ethics landscape exist at the local, provincial/state and federal level. All biobanks are also governed by organizations called Institutional Review Boards (IRBs). Since biobanks collect and store human samples, they must adhere to performing informed consent and minimize risk to anybody who donates a sample. In addition to following HIPAA rules and receiving the National Institutes of Health’s Certificate of Confidentiality, the Indiana Biobank was approved by the Institutional Review Board (IRB) at Indiana University. The IRB ensures that all research follows strict federal and local guidelines to protect the rights and safety of all participants. The IRB also requires that all researchers complete training to know how to protect the rights and safety of all participants. The IRB monitors research to make sure it remains ethical.

No.

The Indiana Biobank has extensive biorepository capabilities for storage and management of biological specimens. They utilize multiple facilities and locations across the campus for liquid nitrogen, electric freezers and ambient storage.  Multiple disperse locations provide equipment and specimen redundancy and security in case of catastrophic failure. Equipment is monitored by three alarm systems and an emergency power back-up system.

The biobank does not inform participants if their samples have been used in research. After a donor's sample is collected, the biobank will divide it up into smaller samples so that it can be used by many different research projects. This would make it cumbersome for the biobank to inform participants each and every time their sample is used. Whether your samples have been used by researchers depends on a variety of factors including your past medical history, what medicines you might be taking, and certain demographic characteristics. To learn more about this process, visit the story of a biobank sample page.

Currently, there is no way for donors to track what research projects have used their samples.