Frequently Asked Questions
About DNA
What is DNA?
- Think of DNA as your own genetic set of instructions. This genetic makeup tells your body how to function and gives you the characteristics that make you, you!
Why is it important to study DNA?
- Genes control everything from your height, to how you respond to certain medications, and even your risk for developing disease. The more we know about DNA, the more we can personalize healthcare at a genetic level. We want to discover new connections so we can prevent disease and improve treatment.
How can you tell if someone has a higher risk for disease based on their DNA?
- Using genomics, our scientists analyze DNA to look for known disease-causing gene mutations. If these are present, it can often indicate a higher risk for related disease.
How can this help prevent disease?
- Knowledge is the first step in prevention! Once we know what diseases you might be more prone to, your healthcare provider can create a personalized plan of action to help prevent those diseases from developing or catch them at an earlier, more treatable stage.
About Participation
Do I need an appointment to sign up for or donate a blood sample to the study?
- No appointments are necessary. You may sign up online here. Then, visit an Intermountain lab or draw station to donate a small blood sample to the study. Walk ins are welcome.
What happens after I sign consent?
- Drop by an Intermountain lab or draw station and let them know you’re there to donate blood for the HerediGene study.
- One of our skilled phlebotomists will perform a simple blood draw. Less than 2.5 teaspoons of blood are all that is needed.
If I get regular lab work ordered by my provider, can I wait to donate my blood sample until my next draw?
- If you have a scheduled blood draw in the next 90 days, your provider can draw blood for HerediGene at the same time as your other lab work.
What happens with my sample after it’s drawn?
- Your blood sample will be de-identified and given a random number. This protects your privacy so researchers can analyze the DNA without knowing your name or private information.
- If we detect a genetic variation associated with a condition we can treat, you can choose to be notified and have the opportunity to receive clinical testing to confirm at no cost. We predict only a very small number of people will have a variant we can report on. Most participants will not be contacted after participation.
- If clinical tests do identify a treatable genetic variant, a federal act called the Genetic Information Nondiscrimination Act (GINA) protects you from genetic discrimination in health insurance and employment. This means health insurers cannot use your results as a reason to deny coverage or determine premium prices, nor can your employer base decisions about your employment on your genetic results.
Will I receive a report on my genetic risks?
- It is predicted that a very small percentage – about 3% of the population – will receive a report identifying a known, disease-causing variant. You can choose to learn your results or refuse them. We will only report on variants we can treat and/or manage. HerediGene: Population Study results do NOT replace clinical testing. If you choose to learn your results, you will be offered clinical testing to confirm the findings at no cost.
- Most participants will NOT hear back on the findings. Negative results, in which no known or treatable disease-causing gene variants were found, will not be reported back. A negative results from HerediGene does not mean you are free from the risk of genetic conditions. Talk to your doctor or genetic counselor if you have a family history of hereditary disease or believe you are at risk for hereditary disease.
Is there a cost to participate?
- No, there is no cost to you. The HerediGene: Population Study will cover the cost of research testing.
Is the data I submit through the e-consent secure?
- Yes, the information you submit via the secure e-consent form is encrypted and protected by law under the Health Insurance Portability and Accountability Act of 1996 (HIPAA). Intermountain has taken reasonable steps and has employed industry-standard practices and technology to ensure the integrity and confidentiality of personally identifiable information. View our Privacy Notices for more information on Intermountain’s privacy practices.
For Health Providers
How does this project empower providers as they treat patients?
- Knowing if a patient has a disease-causing variant can help providers make more informed and personalized care decisions when working with patients. The research derived from this project may help to advance early detection and new treatment options for patients who are susceptible to diseases such as cancer and heart disease.
How can I get involved?
- Caregivers, like all eligible patients and community members, are welcome to participate. Caregivers are under no obligation to participate. But if you do choose to join the study, your contribution may help inform the kinds of discoveries that improve healthcare for all.
- If your patients approach you with questions about the study, refer them to this website to learn more and sign up.
Why is Intermountain carrying out the HerediGene: Population Study?
- Intermountain Healthcare is leading other health systems across the world in precision genomics, changing the way patients plan for their health and receive care when they need it. By studying the genetic makeup of such a large group, we have the potential to make discoveries that may allow us to predict individuals’ risk of disease and even prevent diseases from developing.
- At Intermountain Healthcare, we are focusing on how to unlock the mysteries of the human genome. Our researchers know that the patient population would benefit greatly from applying genetic technology and precision medicine more fully to combating the diseases that continue to elude us as clinicians.