Frequently Asked Questions
We take a blood sample from you so that we can extract the DNA (deoxyribonucleic acid) from it. DNA is how people store information we inherit from our parents; that information directs how we grow and develop. The DNA information is contained in pieces, called genes. We analyze the DNA to understand how peoples’ genetic information differs. We also store some of the sample for future research. We hope to make new discoveries that will improve our understanding of disease and lead to new diagnoses and treatments.
There are three ways we could collect a blood sample from you. We may use a leftover sample from a clinical test, we may get an additional tube when your physician orders a clinical test, or we may ask you for a research specific sample.
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.
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.
Research can take a long time; therefore, we cannot guarantee that we will find information in your sample. As more samples are processed and genotyping is completed, the Biobank may find information that is medically important for some participants.
If we learn something about your sample, we may be able to return this information. We will ask for your permission before returning any results. However not everyone will have this information, so we cannot guarantee that you will have results returned.
The genetic tests done on your sample were selected to answer research questions. However, the results from some of these tests are ‘medically actionable’, meaning that they could affect your health or medical care.
There are three 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.
- Results that may identify you as being a ‘carrier’ for a 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.
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 the Biobank finds one or more genetic results that are relevant to your health, you may be invited to sign a consent form that allows the Biobank to return your results. The Biobank will return results to your electronic health record. In certain circumstances, we may contact you about your results.
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.
When you agreed to give the Biobank a blood sample, you gave the Biobank permission to perform certain genetic tests on your sample. While many genetic tests are done for research, a small number of genetic test results may give information about your health and could affect your medical care. Having this information may benefit an individual. You were invited to sign a consent to receive this information, because some genetic test results from your sample may be available.
You can contact the Biobank staff and request a new consent form.
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 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.
Research being done:
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, and on this website.
The Biobank has now consented over 70,000 people to take part in the study. In August of 2018, we expanded enrollment across the UCHealth system by using My Health Connection as an online consenting platform. The more people that take part, the more discoveries we can make.
We have also had our Biobank Laboratory licensed and inspected to process clinical samples and have processed 15,000 samples to date.
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.
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.
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.
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. 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.