What are biobanks?
Biobanks are collections of biological samples – or biospecimens – such as tissue and body fluids. Scientists can use these samples, and the genetic sequencing data from them, to answer important questions. Such as why we get sick and what treatments can help us get better. Biobanks are important to improving patient care and are often used for various research studies.
Why Your Participation is Important
Patients participating in the Biorepository and other research projects can make a difference now and for the future! Research often involves looking for genetic and other biomarker correlations that must be tested and confirmed with many different people.
Examples of successful research studies include the discovery of the genetic underpinnings of Vertigo, or the findings of useful genes in prediction of breast cancer risk.
What is the biorepository?
At Intermountain Healthcare, the biobank is called the Intermountain Biorepository. Intermountain conducts and supports research by Intermountain scientists and by scientists around the world to identify new diagnosis tools and treatments. These discoveries may help Intermountain patients and the broader public. Intermountain facilitates and conducts this research by using de-identified genetic and genomic data from historical patient encounters, and de-identified biospecimens that are no longer needed for patient care.
All clinical and genetic sequencing data gathered from these samples is de-identified before they are used for research. This means that all of the information that could be used to identify a particular person under HIPAA and other applicable privacy laws is removed.
Learn more about de-identification by reading the Intermountain Notice of Privacy Practices.
How are specimens used?
Scientists can request biospecimens from the Intermountain Biorepository for research studies. This includes Intermountain scientists as well as third-party organizations (such as academic institutions, life sciences companies, and health systems).
Committees at Intermountain assess each request for scientific merit. This is part of Intermountain's commitment to its patients and to advancing science.
How can I opt out of the Intermountain Biorepository?
If you would rather not participate, Intermountain is committed to honoring that choice. If you wish to opt out, simply call 801-525-7673. Once you have opted out, Intermountain will stop using any of your biospecimens (or genetic sequencing data derived from them) for future projects.
It's also important that you understand what won't change if you decide to opt out:
- The Intermountain Biorepository will not discard any of your existing biospecimens.
- We will continue to bank new biospecimens pertaining to you in the Intermountain Biorepository but they will not be used for research unless you decide to change your mind about permitting biospecimens being used for research.
- If your biospecimens are already being used in a research project, researchers can continue to use your biospecimens so that the study can be completed properly.
- If you have separately consented to participate in a specific research study involving the use or disclosure of your biospecimens or data collected from you, opting out through this process will not revoke that separate consent nor end your participation in that research study. You will continue to be enrolled in any such studies unless you decide to stop your participation by informing the investigators on those specific studies.
- Opting out will not change how Intermountain creates, uses, and shares de-identified information about you, (including genetic sequencing data derived from your biospecimens by the Intermountain Biorepository) for non-research purposes. For example, quality assurance initiatives. You can learn more about how Intermountain uses and discloses information about you in our Notice of Privacy Practices.
- Intermountain may continue to offer you other opportunities to participate in research, including research involving the collection of new biospecimens for a particular project.
If you change your mind about participating in these important efforts, you can call 801-525-7673 to opt back in.