GENETIC TESTING & YOUR HEALTH STUDY
Discover What is in Your Genes
We are offering genetic testing free of charge to patients at Northwestern Medicine who are over 18 years old as part of a research study with the Center for Genetic Medicine at Northwestern University. We hope to learn more about:
- How you understand genetic information
- How you use genetic information in your life and in making health care choices
- How doctors use genetic information
Genetic testing looks for changes in our genes. Genes are the instructions that tell our bodies how to grow and function. Genes are made up of building blocks called DNA. They type of genetic testing we will be doing is called sequencing. Sequencing looks at how DNA is organized in a gene.
We will be testing for genetic differences that have been linked to the causes of disease or conditions, such as:
- Certain types of cancers and heart conditions that can be passed down in families
- Your body's response to some medications
- Certain types of skin or allergy conditions
- Some conditions associated with behavior and learning
We still have a lot to learn about genes and their effect on our health. In this study, we will also test other genes to learn more about their impact on our health. We will test about 130 genes in total.
- This study will not provide genetic testing for every genetic condition. Also, this study is using a type of genetic testing called sequencing. Sequencing does not detect all types of genetic changes.
- Sometimes, genetic testing is recommended for your immediate medical care. Please speak with your doctor or a genetic counselor about ordering those tests separately.
The results from your genetic test will be returned to you and placed in your Northwestern medical record. Your results with either be returned to you in a letter, or a doctor or genetic counselor will call you with you results.
It might take up to a year to get your results. About 5% of participants are expected to have a genetic difference that impacts their health.
How To Participate
Participation requires a 20-30 minute enrollment appointment. During this appointment:
- You will read and sign the consent form. Your consent will allow us to access your medical record to get information about your health over the course of the study.
- You will complete a survey that asks questions about your health and thoughts about genetic testing.
- You will have one tube of blood drawn for genetic testing.
We would like to enroll 3,000 patients from Northwestern Medicine over the next three years. We hope to enroll people of every race and ethnicity.
Participants will also be offered the opportunity to enroll in NUgene, Northwestern's genomic biobank.
Protecting your privacy is essential. All of the information we collect will be securely stored. We may share some of this information with other researchers. Any shared information will be de-identified, which means it will be not be connected to your name or other information that could identify you.
Northwestern is part of the eMERGE network - a group of health care organizations in the United States working to study the use of genetic test results in medical care. This study is funded by The National Institutes of Health (NIH). The NIH is the government agency that funds most medical research in the United States.