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What does the Indiana Biobank collect from its donors?

Biological Samples

Being a donor at the Indiana Biobank means that the biobank has stored a biological sample that was collected after you consented to the biobank. The most common type of biological sample that donors provide is blood.

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The biobank might also collect and store other bodily fluids such as urine and saliva, or other blood products such as plasma. However, the biobank will reach out individually to donors to collect these additional samples.

Access to medical records

Being a donor at the Indiana Biobank also means that the biobank can access your medical records to:

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  • Determine if you have a certain medical condition that a researcher is studying

  • Have an up-to-date snapshot of your health to assess if your sample is eligibility for certain studies

  • Access health information such as family history or past medical procedures that are of interest to researchers​​​

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How are samples and data kept secure?

To protect donor's privacy, the biobank only shares de-identified or anonymized data with donors. This means that the data will not contain a donor's name, address, birthday, or social security number. Here are some other ways the biobank protects donor's data:​​​​​

• The Indiana Biobank does not give researchers access to donors’ medical records. Instead, the biobank will collect any information from medical records that a researcher might need and provide it to them. • While the biobank has access to donors' medical records, they very rarely store any of the data from these records on their own servers.

The biobank also takes the following steps to ensure that donor samples are secured:​​​​​

• Samples are stored in a secure location on the Indiana University School of Medicine campus. Access to sample storage is provided only to staff and affiliates at the Indiana Biobank. • Once a researcher receives approval to use donor samples, members of the Indiana Biobank team will retrieve donor samples from storage, prepare them for delivery, and then ship them to the researcher. • Donor samples do not have donors' names attached to them. The samples are given an identification number that can only be identified by biobank staff.

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