Frequently Asked Questions

We collect a blood or saliva sample from you so that we can extract your DNA and process it to look at your genetic code.  We merge your genetic code with your health information from your electronic health record at UCHealth and make this available for research. Before we share your genetic or health information for research, we remove any personal identifiers so that researchers cannot identify you or other biobank participants.

We get your sample by collecting an additional tube of blood when you are having a clinical blood draw at a UCHealth facility.  We may also collect a saliva sample at certain clinics or events at UCHealth.  As with any clinical sample, the tubes have some personal details such as your name and date of birth, in order to identify the sample. When the sample is used for research, it is given a unique code and only the biobank is able to link that to your information.

Researchers outside the biobank will generally not have access to information that can directly identify you, such as your name, address, or medical record number. Such information may be required by researchers for certain types of research. This would only happen with permission from the Biobank Access Committee and additional authorizations granted by the Colorado Multiple Institutional Review Board (COMIRB). COMIRB is an administrative body that protects the rights and welfare of human research subjects.

The original biobank consent form you signed was limited in scope and information. The biobank research study has expanded and made much progress, and the updated consent form contains new information about the biobank research study, your rights as a participant, how we share information, and the potential return of genetic test results. More details can be found here.

There are two types of clinical genetic test results the biobank may be able to return:

• Results that may predict your responses to medications. Some clinical genetic test results may help a healthcare provider understand if a person may need a different medicine or a different dose of a medicine.
  
• Results that may predict your risk of diseases. Some clinical genetic test results predict that a person is at increased risk of some cancers, heart diseases, muscle diseases, or other diseases.
  

The biobank will only complete limited clinical testing on some selected genetic conditions, risks, and responses to medicines. Over time, the number of biobank tests may increase.

If you signed a biobank consent form on or after October 1, 2019, you have given us permission to share medically relevant information with you. The biobank will return results to your electronic health record. In certain circumstances, we may contact you about your results.

If you signed a biobank consent form before October 2019, you have not consented to get results from the biobank, and you must update your consent form if you wish to have results returned. We have recently started to re-contact participants through My Health Connection to invite them to update their consent.

We cannot guarantee that everyone will receive results. It is important that you know that in many people we will not find any relevant clinical genetic test results to report. Also, not all participant samples will have genetic testing done on them.

If you do not hear from the biobank about your results, this does NOT mean that you are not at risk of getting some diseases or having adverse responses to medications.

It is important to remember that if you are not contacts by the biobank, it does NOT mean that you don't have a genetic variation that may increase risk for the conditions listed below.

Not everyone will receive results. It is important to remember that this is primarily a research project to make general discoveries about health and risk of disease using data analysis of large populations. We are working on ways to return medically important results to individual participants in a sensitive and ethical manner.

If you are concerned about your or your family's health history, you should talk to your doctor about a more complete genetic test or evaluation. The biobank genetic test is not as complete as genetic tests ordered by a medical professional. 

We will keep you informed about our work, updates to the biobank, and new opportunities that you may be interested in through our newsletter.  We plan to send this out via email, and some newsletter content will be available on this website.

To see the biobank's progress, click here. 

The primary purpose of the biobank is to help researchers study how our genes affect our health and well-being.  More research can be done if biobanks share information with other researchers or databases that have similar data. We may share your information with some federal agencies, authorized researchers, commercial companies with whom we partner, the Colorado Multiple Institution Review Board, the biobank team, and UCHealth officials. 

The biobank plans to share some of the genetic data we have generated in databases such as dbGaP, which stands for ‘Database of Genotypes and Phenotypes’ that is sponsored by the National Institutes of Health (NIH). Data shared with dbGaP is de-identified to remove personal identifying information such as names, addresses, and date of birth. By sharing data, we hope to help researchers to conduct more research on more health conditions with the goal of finding better treatments.

For example, researchers will be able to access the data from many people with and without asthma and look for genetic differences that are shared between people with asthma that are not present in people without asthma. By doing this, researchers may be able to identify the genetic differences that may be related to asthma. Similar studies can be done for cancer and diabetes.

More information about dbGaP can be found at https://www.nih.gov/news-events/news-releases/nih-launches-dbgap-database-genome-wide-association-studies. If you have any questions or concerns about this, please contact the biobank team here. 

We take the protection of your privacy very seriously. We will take all reasonable steps to keep your information private. All information used by this study will be protected using secure computers and locked files, so that only authorized people can access it.

Whenever possible, donated samples and your health information will be stored with a code and not your name, social security number, or other easily identifiable information. However, because some information such as your genetic information is unique to you, there is a small chance that someone could trace it back to you. The risk of this happening is very small.

If you have further questions about this study, please call the biobank at 303-724-9944 or email us at CCPM-biobank@cuanschutz.edu. You can also reach out to us using the contact page on this website.

If you have questions about your rights as a research subject or the conduct of this study, please contact the Colorado Multiple Institutional Review Board (COMIRB) at 303-724-1055.