Who is eligible to participate?
You may be eligible for this study if you meet the following criteria:
- 19 years or older
- Have not received a bone marrow or stem cell transplant from a donor
- Currently a Nebraska Medicine patient with a One Chart | Patient account
If you have been seen or received care at Nebraska Medicine clinics or hospitals in the past but do not have a One Chart | Patient account, you must create one before you can participate.
You can sign up for One Chart | Patient online or by emailing onechartpatient@nebraskamed.com or by calling 402.559.0700.
How do I participate?
- Visit the enrollment website: Go to the enrollment website hosted by our partner Helix. You will be asked to confirm your identity by logging into your account in the One Chart | Patient portal.
Once you've logged in, you'll be taken to Helix's enrollment website. At that time, your contact information and some other details associated with your Nebraska Medicine account like your name, email, phone number, date of birth and medical record number, will be shared with Helix, our partner, to assist with the enrollment process.
If you do not have a One Chart | Patient account, you can sign up here. - Learn more about the project and see if you’re eligible: On the Helix website, review the information. If you are eligible, you'll review and sign a research consent form before enrolling in the project.
If you have any questions about the study or the consent form, you can contact the Genetic Insights Project team at geneticinsights@nebraskamed.com or by calling 402.559.1350. - Provide a blood sample: Once enrolled, you will provide a blood sample at a Nebraska Medicine laboratory.
- Get your results: You’ll receive your results approximately eight to 12 weeks after your blood draw. You can create an account with Helix to access more information about your genetic ancestry and traits.
Please note: The information provided before informed consent is signed may be stored by Nebraska Medicine and/or Helix to keep track of potential participants in order to contact those who are interested and allow consent for only those who are eligible.
What conditions will my DNA be tested for?
You will receive information about the presence or absence of genetic changes called variants or conditions, that may increase your risk for cancer or heart disease.
These conditions are:
- Hereditary breast and ovarian cancer (HBOC): A hereditary form of breast and ovarian cancer, specifically linked with abnormalities in 2 genes (BRCA1 and BRCA2). Other cancers associated with these genes include prostate, pancreas, and melanoma type cancers.
- Lynch syndrome: The most common cause of hereditary colorectal (colon) cancer. People with Lynch syndrome are more likely to get colorectal cancer at a younger age and are also at an increased risk of developing endometrial, ovarian, upper GI, brain, pancreatic and/or other cancers.
- Familial hypercholesterolemia (FH): A hereditary form of very high cholesterol that increases your risk of early coronary artery disease and heart attacks.
In addition, if you sign up for a Helix account, you’ll receive information about your genetic ancestry and how your DNA may influence certain traits such as gluten intolerance and caffeine sensitivity.
What if my DNA indicates an increased risk for a disease?
About 1-2% of participants’ results show they are at an increased risk for certain conditions. If you have an increased risk, a member of the Nebraska Medicine study team will contact you about your results and you will be able to schedule a genetic counseling appointment at no cost to you or your insurance.
How comprehensive are my results?
The genetic screening test done for the Genetic Insights Project focuses on three specific conditions:
- Hereditary breast and ovarian cancer syndrome
- Lynch syndrome (increased risks for colorectal and endometrial cancer)
- Familial hypercholesterolemia (very high cholesterol)
We focus on these three conditions because they occur often enough in the general population. Plus, if you discover you have one of these conditions, there are specific actions you can take to reduce your risk.
This genetic screening test does not analyze all the potential risks linked to your DNA. It is not meant to replace in-depth genetic testing.
Talk to your doctor if you are concerned about your risks or have a previous diagnosis of any of the tested conditions.
Is there a cost to participate?
There is no cost to you to participate in this program. Participants will not receive compensation.
How will my information be used?
Your DNA and health information will become part of our genetic research databases. The information in these databases will be used by researchers to help us better understand the causes of certain conditions and how we can treat them more effectively.
The databases created by this program will be used for future research by Nebraska Medicine, our genomics partner Helix and other researchers. Any information shared outside our network does not contain information that directly identifies you and is carefully reviewed to ensure it is ethical, secure and protects your privacy.
How will you protect my privacy?
Your privacy is important to us. Here are some of the ways we protect your genetic information:
- Your information (genetic and ongoing health information from your Nebraska Medicine Medical Record) is stored in secure databases.
- We limit and closely monitor who can access your data. Researchers must be trained and certified to work with this type of research data.
- Your information is de-identified for research purposes, meaning researchers using the Network Database will not see information that could identify you, such as your name.
- You can choose to withdraw and stop sharing your information at any time.
What is personalized health care or precision medicine?
Precision medicine is an emerging approach to prevent and treat diseases. It uses biological, environmental and lifestyle information to help develop personalized treatments. By combining this information, doctors and patients can develop targeted prevention, detection and treatment plans.
Precision medicine aims to provide the right medical care to the right patient, at the right time.
Why is DNA important to research?
DNA is our genetic information. It provides the instructions that tell our body how to develop and work, including physical traits (like eye color), and insights into one’s ancestral roots. DNA also provides health information about our risk of developing certain inherited conditions. There are many similarities in everyone’s DNA, but also important differences.
Your DNA code is unique to you. We are still learning how DNA impacts health, and the information we know from studies like the Genetic Insights Project will help us provide more personalized health care for our patients, their families and the community.
Have additional questions?
Contact the Genetic Insights Project team by emailing GeneticInsights@NebraskaMed.com or calling 402.559.1350.
The principal investigator on this study is Douglas Stoller, MD, PhD.
Genetic Insights Project, IRB #0645-23-CB.
University of Nebraska Medical Center, 982265 Nebraska Medical Center, Omaha, NE 68198