Indiana Biobank
This statewide effort collects blood samples to be used in health research
Scientists who are researching new treatments for diagnosis like cancer or heart disease need blood and other biological samples to use in their studies.
These samples can come from healthy individuals or individuals who have the disease. The Indiana Biobank is a statewide effort that supports researchers by supplying blood and other biological samples for discovery research.
What to Expect
IU Health is inviting patients to be part of the Indiana Biobank. This is a voluntary option. If you agree to participate in the Biobank, you will be asked to donate a blood sample. This blood sample will be collected during your next blood draw and will be linked to your electronic health data.
Your sample, along with samples from thousands of other patients, can be requested by researchers who are studying new ways to prevent and cure disease. The samples and data used by researchers will be “de-identified,” which means any identifying information about you is removed, and then used by approved researchers for specific studies. For example, researchers studying new ways to diagnose bladder cancer may request hundreds of samples from people with a diagnosis of bladder cancer. The researchers receive de-identified samples that may only be used for that specific bladder cancer study.
Researchers need to use large numbers of blood samples and patient health data to search for trends in disease and health. They use this important data from a variety of different people to test theories and explore new ideas about detecting, treating and curing disease. Donations from healthy patients are just as important as donations from patients with disease because scientists need healthy subjects to use as controls as they study how disease forms.
Indiana Biobank samples have helped researchers find new ways to diagnose diseases, track health trends across the state and deliver the right treatment to the right patient at the right time.
All health data is collected and stored with the upmost consideration for patient privacy and safety. The Indiana Biobank follows the same HIPAA rules as other U.S. healthcare organizations.
If you are interested in becoming part of the biobank, please email the Indiana Biobank at MyINBio@iu.edu or call 317.278.0880.
Frequently Asked Questions about Indiana Biobank
What is the Indiana Biobank?
The Indiana Biobank is a statewide Initiative developed by Indiana University School of Medicine and IU Health in 2010. The goal is to expand research that will lead to individualized patient care. The Indiana Biobank offers every IU Health patient the opportunity to participate in this effort by donating a blood sample.
What is a biological sample?
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.
Why should I participate?
By providing a biological sample, your information joins information from thousands of other patients in a large bank of data that can be used in research studies to prevent disease. Most participants will not receive any individual results about the research using their samples.
How does the Indiana Biobank work?
The Indiana Biobank collects and securely stores biological samples that are de-identified and coded to remove any personally identifiable information. The de-identified samples and data are provided to approved researchers who are doing discovery research to treat and prevent diseases.
Participating in the Indiana Biobank
How do I join the Indiana Biobank?
If you are an IU Health patient, IU Health may send you a text message inviting you to join the Indiana Biobank. If you join the Indiana Biobank, we will collect a blood sample from you during your next scheduled blood draw at IU Health hospitals across the state or at a convenient time for you. The blood sample is stored at the Indiana Biobank, and the sample is linked to your electronic health record (again, no patient identifying information is relayed to the approved researcher, only de-identified information). You can also join by emailing the Indiana Biobank at MyINBio@iu.edu or calling 317.278.0880.
Who is eligible to participate?
All patients who receive care at IU Health hospitals and associated clinics are eligible to participate in the Indiana Biobank.
Will my consent to participate affect my care?
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.
Can I change my mind?
Your participation is completely voluntary, and you may withdraw your consent any time. Any research data already obtained by the Biobank will remain part of that research. If you have additional questions or want to withdraw from this study, you can email the Indiana Biobank at MyINBio@iu.edu or call 317.278.0880.
How will my sample be used?
Your sample will be used in research studies and projects working to find cures for diseases that we face now and in the future.
How long will my sample be stored?
Your biological sample will be stored for an indefinite period, unless you ask for your sample to be removed.
Is there a fee to participate?
No, there is no cost to you or your insurance for participating in the Indiana Biobank. You will not be paid for participating, and your participation will not affect your ability to participate in any other research.
Privacy and security
How will my privacy be protected? Where will my personal information be stored, such as name, address, email etc.?
The Indiana Biobank follows the same HIPAA rules as other U.S. healthcare organizations, including IU Health. Basic information–like name, address and email–is collected and stored in a HIPAA-compliant database. At the time of consent, no personal health information is collected. Participants are assigned a unique ID number, and their biological sample and identifying information are stored based on this ID. Other than specified study personnel, no one has access to this information.
This information is also protected through the National Institute of Health’s Certificate of Confidentiality. This certificate protects against forced disclosure of personally identifiable information in any civil, criminal, administrative, legislative or other proceeding, whether at the federal, state or local level. This research also follows the Genetic Information Nondiscrimination Act (GINA), a federal law which generally makes it illegal for health insurance companies, group health plans and most employers to request the genetic information we receive from this research and discriminate against you based on your genetic information.
Are there any risks to participating?
There are physical risks that come with any blood draw, such as pain and bruising around the needle stick. There is a possible loss of confidentiality of personal and medical information. Since every person’s DNA is unique, it could be used to identify you.
Although there can be no absolute guarantee of security, every precaution will be taken to ensure that your sample and personal health information are maintained in a highly secure place.
Some de-identified data may also be provided to a government health research database for broad sharing to approved investigators. This information will be de-identified and will not contain your name, date of birth, address or phone number. There is a slight risk that there could be a breach in the security of this database resulting in the access of information.
Will people outside of IU Health get identifiable patient information about me? Will people at IU Health know who I am?
The only people who will have identifiable information about participants in the Indiana Biobank are staff of the Indiana Biobank. They are bound by the same privacy and confidentiality rules outlined above, in addition to all internal protections and mechanisms for keeping patient information and biological samples secure and confidential.
Will I receive information about the study using my sample?
As they analyze your sample, researchers may discover something that could be helpful for you to know. For example, your genetic information may suggest you have a higher risk for a particular disease or condition. The Indiana Biobank may contact some participants later to see if they would like to learn this information. Participants who are contacted can decline this additional information. It is important to remember that any additional information we offer is not a medical diagnosis.
