Discover the possibilities of personalized medicine

We will use your samples and health information for all types of research, including looking at your genetic information. Types of research that may be done include looking for medically important genetic changes and analyzing your genetic ancestry.

There are three types of results we may be able to return to participants.

• Clinical genetic test results that may predict your responses to medications: Your genetic makeup can affect how your body responds to certain medications. For instance, some clinical genetic test results may help a healthcare provider understand if a person may need a different medication or a different dose of a medication.
• Clinical genetic test results that may predict your risk of diseases: Your genetic makeup can affect your risk of having some diseases or health conditions. For instance, some clinical genetic test results predict that a person is at increased risk of some cancers, heart diseases, muscle diseases, or other diseases.
• Clinical genetic test results that may predict your risk of being a ‘carrier’ for a disease: Your genetic makeup can show you are a ‘carrier’ of a genetic disease. People who are ‘carriers’ usually remain healthy and do not develop disease but they may have a higher risk of a disease occurring in their blood relatives including current and future children.

Remember, we cannot guarantee that everyone will receive results. If we do not find any results to return to you, this does not mean that you will not develop a disease or health problem

Not everyone will receive results because, for example, we may find nothing to return. This is a research project to make discoveries about health and risk of disease. We have only recently started processing the donated samples and are working on ways, that if we do find medically important results, to return these to individual participants.

As you can imagine, building the infrastructure to return results to participants takes time and with over 60,000 people now in the Biobank, we are working on the best way to return any results we may find.

We may find something when we analyze your sample that may affect your care or treatment. However, nothing will be placed in your medical records without your consent. It is important to remember that this study is not a replacement for standard clinical testing that you and your physician may decide is appropriate for you.

We are not related to 23 & me. The Colorado Center for Personalized Medicine has some very clever scientists that study population genetics and we hope that we will be able to return ancestry information to those participants that want to receive it.

You will not receive payment for being part of this research study and you will not have to pay anything to be in this study. You and your insurance will not be billed for donating a sample to the Biobank.

We hope to update participants on what type of general research is taking place in the future but will not be able to tell participants about which studies their individual sample or data is being used for. Participants will not be able to choose which studies their sample or information is used for.

No. A large amount of information is generated when we process your sample. The vast majority of it is information that is only valuable for research purposes at this time. Because of the data size and the unknown impact, we are not returning data to participants at this time.

We get your sample by either an additional blood sample collection when you are having a clinical blood draw or by accessing a leftover sample from routine testing. As with any clinical sample, the tubes has 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 not have access to information that can directly identify you, such as your name, address, or medical record number.

If you decide to be in this study, 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.

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.

A federal law, called the Genetic Information Non-discrimination 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. In Colorado, additional genetic protection laws prohibit denial of health care insurance, Medicare supplement insurance coverage, group disability insurance, or long-term care insurance coverage based on your genetic information.

As we collect more samples, we plan to give back information on the progress of the Biobank, the work of the Colorado Center for Personalized Medicine, and our research findings through newsletters[LINK] and on this website [LINK].

The Biobank has now consented over 60,000 people to take part in the study. The more people that take part, the more discoveries we can make. We have been working hard to expand enrollment by using UCHealth’s My Health Connection as an online consenting platform.

We have also had our Biobank Laboratory licensed and inspected to process clinical samples and begun to process the samples we have collected.

You can withdraw from the Biobank clinical research study at any time and you do not have to give a reason. If you decide to withdraw, please call the Biobank at 303-724-9944 or fill out the form here [LINK]. On notification of withdrawal, any unused samples will be destroyed. However, any information or samples already being used for research will continue to be used.