Frequently Asked Questions

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The CCPM biobank consent form is available to all active UCHealth patients over the age of 18.

The CCPM biobank consent form can be found on the UCHealth My Health Connection (MHC) portal. Once signed in to your MHC account, follow these steps to access the biobank consent:

1. Select the Menu button. The symbol looks like 3 horizontal lines stacked on each other.
2. Click Research Opportunities. If you are on your mobile phone, this will be under the Tools tab.
3. Click View/Sign Consent to view the consent form.

 

The original biobank consent form you signed was limited in information. The updated consent form has updated information on:

• Your rights as a participant.
• How we share information.
• The potential return of genetic test results.

You may choose to sign or decline the updated biobank consent form. If you choose to decline the updated consent form, you will still be enrolled in the biobank. However, you will not get any clinical genetic test results from the biobank. See our results page to learn more.

 

If you are having trouble viewing the biobank consent, please contact our team for help.

The biobank mainly collects blood samples from participants. We may offer opportunities for participants to donate saliva samples. If you have questions about sample donation, contact our team.

In the past, the biobank offered mail-in saliva collection kits. We are not offering them anymore at this time. If you have questions about your saliva kit, please contact our team.

No, the biobank requires only 1 sample at this time. This research study looks at your genetic material. That does not change over time and is unique to you.

A biobank sample will automatically be collected at a future UCHealth blood draw. This is free to you. At this time, we are unable to schedule blood draws just for the biobank. However, there is no need to provide a sample right away.

There is no time frame for giving a sample.

There is no limit on the length of time we will store your samples and health information. We may keep using them for research unless you decide to stop participating or we close the biobank.

 

There are 2 types of clinical genetic test results the biobank might be able to return:

• Results that may predict how you respond to certain medicines. Some of these results may help a healthcare provider choose a different medicine or dose.
• Results that may predict your risk of diseases. Some results may predict that a person is at increased risk of some cancers, heart diseases or other rare genetic diseases.

Over time, the number of biobank tests may increase. Visit our results page to learn more.

 

The biobank might not have results for all participants, and results may not be returned for several months, or even years, after enrollment. 

It is important to remember that if you are not contacted by the biobank, it does NOT mean that you don’t have a change in one of the genes that may increase risk for the conditions that the biobank is testing for.  If you are concerned about your or your family’s health history, you should talk to your doctor about a more complete genetic test. The biobank genetic test is not as complete as the test ordered by a medical professional.

 

If you get results from the biobank, they will be sent through your UCHealth My Health Connection (MHC) portal, an email or directly over the phone by biobank staff.

It is important to remember that if you are not contacted by the biobank, it does NOT mean that you don’t have a change in one of the genes that may increase risk for the conditions that the biobank is testing for.  If you are concerned about your or your family’s health history, you should talk to your doctor about a more complete genetic test. The biobank genetic test is not as complete as the test ordered by a medical professional

If you have any questions that are not answered on our results page, reach out to your primary care provider for more information. The biobank may also be able to give some support to participants who have received results. Contact us for more information.

We might find something when we study your sample that may affect your care or treatment. It is important to remember that this study does not take the place of other genetic testing that you and your doctor may decide is right for you. To learn how results are returned, visit our results page.

We will use your samples and health information for all types of research. This includes looking for medically important genetic changes and studying your family information about where you came from (genetic ancestry).

 

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 information from your health record at UCHealth and make this available for research. 

Most researchers outside the biobank will not have access to information that can directly identify you. Access is only granted with permission from the Access to Biobank Committee (ABC) and other authorizations granted by the Colorado Multiple Institutional Review Board (COMIRB). COMIRB is an administrative body that protects the rights and well-being of human research subjects.

We appreciate you taking part in the biobank and your willingness to help with other research studies. We may contact you in the future to take part in other studies as they become available. Until then, feel free to browse studies that are looking for participants here: https://researchstudies.cuanschutz.edu

 

As with any clinical sample, biobank samples have some personal details such as your name and date of birth. This helps identify the sample. When the sample is used for research, it is given a unique code and only the biobank can link that to your information.

Most researchers outside the biobank will not have access to information that can directly identify you. Access is only granted with permission from the Access to Biobank Committee (ABC) and other authorizations granted by the Colorado Multiple Institutional Review Board (COMIRB). COMIRB is an administrative body that protects the rights and well-being of human research subjects.

 

All information used by this study will be protected using secure computers and locked files. Only authorized people can access this information.

Whenever possible, donated samples and your health information will be stored with a code and not any personal identifiers (like name or date of birth). 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.

 

We may share your information with some, including: 

• Federal agencies. *
  
• Authorized researchers.
  
• Commercial companies we partner with. 
  
• The Colorado Multiple Institution Review Board (COMIRB).
  
• The biobank team.
  
• UCHealth officials. 

If you have any questions or concerns about this, please contact us.

*The biobank plans to share some of the genetic data we have generated in databases such as the Database of Genotypes and Phenotypes (dbGaP), that is sponsored by the National Institutes of Health (NIH). Data shared with dbGaP has your personal information removed. By sharing data, we hope to help researchers do more research on health conditions to find better treatment options.

 

A federal law, called the Genetic Information Nondiscrimination Act (GINA) generally makes it illegal for health insurance companies, group health plans and most employers to discriminate against you based on your genetic information. States have their own protections for genetic information.

 

Health insurance companies would not be able to use your genetic information as a reason to deny coverage or set premiums. However, life-insurance companies, disability insurance or long-term care insurance companies may need to evaluate your medical background, alongside other factors, before offering you coverage.

 

 

You can withdraw from the biobank research study at any time and for any reason. If you decide to withdraw, please submit a request in writing by clicking here. You may also call the biobank at 303.724.9944 or email at [email protected]. 

Any unused samples will be destroyed. However, any information or samples that have already been used for research cannot be destroyed.