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ODG Getting Results Back

What kind of results will I have the option to receive?

If you join the study, you have the option of deciding if you would like to learn of genetic health information that increases your risk of a treatable health condition. We expect to find these results in about 5% (1 out of 20) of people. So, most people (95%) will not have a genetic change that increases their risk for disease. If you choose to receive results from the study, we will tell you if we find a genetic change that increases your risk for the following treatable or preventable health condition. If we don’t find any health-related changes in your DNA, we will not contact you.

This means 95% of people will not have a result returned, and will not be contacted.


How is it decided what genetic information gets returned to me?

The OneDukeGen team follows accepted community standards on returning genetic results. A group of Duke medical providers, scientists, and community advocates at Duke agree on what is considered for return, which may change as the medical community learns more.

Here are some of the conditions you may receive a result on:

Hereditary Cancer Conditions

These conditions are associated with an increased chance of cancer. Management for these conditions may include specific screening tests or surgeries.

  • Breast cancer – Individuals with these conditions have an increased chance of having breast and some other types of cancer, which may affect biological men and biological women. Management may include tests such as mammograms, MRIs, or surgery.
  • Colon cancer- Individuals with these conditions have an increased chance of having colon and some other types of cancer. Management may include tests such as colonoscopies, surgery, or other more specialized procedures.
  • Other cancers – Individuals with these conditions have an increased chance of developing certain rare cancers. Management may include tests such ultrasounds, surgery, or other more specialized procedures.

Cardiovascular Disease

These conditions impact the function of the heart, including issues with the heart muscle, rhythm or vessels. Individuals with these conditions may follow up with specialized cardiologists, have increased heart screening (such as EKGs or echocardiograms), or take preventative medications.

  • Cardiomyopathies – Conditions that impair the heart muscle's normal function. Arrhythmias –Conditions that affect the heart’s rhythm or beat, causing the electricity in the heart to not work as expected.
  • Vascular – Conditions that affect the body’s blood vessels.
  • Hereditary high cholesterol – A genetic form of high cholesterol.

Other Conditions

Conditions in this category relate to the function of varying body systems, including the eyes and muscles.


What should I expect if I have a result returned to me?

If we find a result for a treatable or preventable health condition and you have told us you’d like to receive them, we will first reach out to you to confirm that you would still like this information and haven’t changed your mind. If so, You will next speak with a genetic counselor on the study team. They will review the genetic change discovered; explain how it may affect your health, your family, and their health and what steps to take next. The genetic counselor will answer any questions you may have. This service will be provided for free.

We will provide you with a summary report of the result. It will include all of the information that was discussed with you, including an explanation of the genetic change, the health condition you are at-risk for, how the condition may be treated, and how to receive care for this condition at Duke.

We will also give you a medical guide based on your results. These may include preventative care and treatment options to reduce your risk or to detect it early.

Preventative care may include:

  • Screening for heart disease or cancer, including blood tests, imaging (MRI, EKG, ultrasound, etc.), and physical examinations
  • Medications to prevent symptoms from developing
  • Other preventative measures

We will help guide you to find the appropriate follow-up care at a Duke clinic


I have a lot of medical conditions, and I want to find an answer and a treatment. Will this study help me?

This study will give results for a pre-determined list of diseases that are well known to be treatable or preventable. Other genetic results will not be returned.Since this is a research study and we might not be returning genetic information related to the medical conditions you have, these results cannot replace your regular medical care.


How might my results affect family members?

Genetic conditions can be inherited or passed on in several ways. Sometimes one gene passed down from a parent is enough to cause disease.

We may make recommendations for family members depending on the genetic change found. Usually, genetic testing is used to determine if family members have the same genetic change.


How long will it take to get results?

We cannot provide an exact time frame to get results. Since this is a research test, if you have results to be returned, it could take years to receive results. This research study should not replace clinical care that you need.