Questions about Genetics
DNA is a special chemical in our bodies that acts like a set of instructions. It tells our body how to grow and how to work. Some changes to our DNA can cause health problems.
No. You will not need to change your diet or medications to participate in the study. They do not impact your genetic results.
The only medical condition that impacts your DNA is having received a bone marrow/stem cell transplant. People who have had a bone marrow transplant will not be eligible to participate in OneDukeGen because the DNA from the donor could get confused with your own DNA. No other medical condition affects your DNA nor prevents you from participating in the study.
Data Protections
A federal law called the Genetic Information Nondiscrimination Act (GINA) provides some protections from genetic discrimination. It provides employment and health insurance protections from discrimination based on the results of a genetic test, with a few exceptions. It does not provide protections for companies that sell life insurance, disability insurance, or long-term care insurance.
No. We have obtained a certificate from the U.S. National Institutes of Health that adds extra protection to your data and samples. With this certificate, we cannot share your genetic data or samples with law enforcement.
Your information will be put in a database. The database will be stored and protected by Duke, and access to it will be controlled by Duke and its Affiliates. It is not openly available. This identifiable information, as well as the genetic data from your blood or saliva sample, will be protected with the same level of security as your regular health information. Your name, address, or any other information that could directly identify you will be removed before your samples or health information are made available for access by researchers outside of Duke.
Some information like dates are considered to be indirect identifiers and will be coded to protect your identity. We do this as part of the process known as de-identification. Your de-identified samples, DNA information, and health information may be accessed by researchers from other universities and institutions, the government, and drug- or health-related companies.
No. This study is being done to learn more about how genes influence health and disease. We will use your samples to study genetic changes, but cloning people is not scientifically feasible or ethical, and it’s not something we do. The goal is to contribute to medical research and find ways to improve treatments, not to create clones.
Collecting a saliva sample will not hurt. Collecting a blood sample is the same as getting blood drawn at a doctor's office. You may experience some discomfort or bruising on your arm. Where possible, we will try to time the OneDukeGen research sample collection to when you are already getting blood drawn for your clinical care.