Indiana Biobank

A biological sample is any human fluid or tissue that can be collected for research purposes. The Indiana Biobank typically uses blood samples because they allow researchers to extract important genetic information through your DNA. This information helps scientists answer scientific questions, such as which medicines work best for certain types of genetic makeup.

All patients who receive care at IU Health hospitals and associated clinics are eligible to participate in the Indiana Biobank.

You might get a text or message in your IU Health portal asking if you’d like to join the Indiana Biobank. If you say yes, you’ll get more info and be asked to sign a form. Then, the next time you get your blood drawn at IU Health, a sample will go to the biobank—no extra visits, no extra cost, and no extra work.

You can also join by emailing the Indiana Biobank at MyINBio@iu.edu or calling 317.278.0880.

Joining the Indiana Biobank is your choice, and you can change your mind at any time. If you change your mind, any data already collected can still be used in research. If you have questions or change your mind, you can email MyINBio@iu.edu or call 317.278.0880.

No, it won’t cost you or your insurance anything to join the Indiana Biobank. You won’t be paid for joining the Indiana Biobank.

No. Your decision to provide (or to not provide) a biological sample does not affect your care in any way. If you agree to the collection of an additional tube of blood, IU Health team members will collect this sample at your next blood draw or when it is most convenient for you. If you decline to volunteer a blood sample, it will not affect your relationship with your care team or the services you receive.

Your name and personal details are removed, so no one knows who the sample came from. Only approved researchers can use the samples in the Indiana Biobank to discover new ways to treat and prevent diseases.

You won’t be told exactly which studies are using your samples and information, and not every sample is used in every study.

Your sample will be stored for as long as needed, unless you ask us to remove it.

We can’t list every study your sample might be used for, and new research questions will come up in the future. One of the best things about the Indiana Biobank is that it can keep helping science for many years, using your sample to discover new ways to improve health for you and your family.

We 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, we might contact you to see if you want to learn about it. You can always say no.

We may 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.

The Indiana Biobank follows the same HIPAA rules required of all U.S. healthcare organizations (including IU Health). Basic information–like name, address, and email–is collected and stored in a HIPAA-compliant database. Only key staff members at the Indiana Biobank are approved for access to this database.

Your name and personal details are removed, so no one knows who the sample came from. Each sample is given a unique code number. All samples and health information are stored with this code. Only approved researchers can use the samples in the Indiana Biobank.

Your health information and samples are also protected by the National Institutes of Health’s Certificate of Confidentiality. This means your identifiable information can’t be used in legal actions or lawsuits without your permission—except when the law requires us to report things like:

• Child or elder abuse
• Certain infectious diseases
• Threats to harm yourself or others

We also follow the Genetic Information Nondiscrimination Act (GINA), a federal law that makes it illegal for health insurance companies, group health plans, and most employers to request any genetic information from you or discriminate against you based on your genetic information.

There are a few small risks with giving a blood sample, like pain or bruising where the needle goes in.

We take every step to protect your sample and personal information. But, no system is 100% secure. There’s a very small risk that someone could break into this system. There’s also a small chance that your personal or medical information could be seen by someone it shouldn’t.

Some information—with your name and other personal details removed—may be shared in a secure government health database for research. Because your DNA in your blood sample is unique, it could be used to identify you. Only approved researchers can use the samples in the Indiana Biobank. Only approved Indiana Biobank staff can see your personal information.

Only approved Indiana Biobank staff can see your personal information. They follow strict privacy rules and use secure systems to keep your information and samples safe and confidential.

Yes. 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.