Study about Genetic Testing Results for Young Adults 18 to 21 Years Old
Why are we doing this research?
Cincinnati Children's is conducting a research study to understand more about the choices teens and young adults make when deciding whether or not to learn genetic testing results. Genetic testing may tell a person their chance of developing or passing on a genetic disease.
Who can participate?
Young adults (18 to 21 years old) and a parent can participate.
- Healthy Infants, Children and Adolescent Studies
- Healthy Adults
- Adult Studies
What will happen in the study?
If you decide to join this study, the following things will happen either online or in person at a study visit.
You as the participant will:
- Watch videos and make choices about what, if any, genetic information you want to learn. You will talk with a study team member and parent (if applicable) to make final choices about what, if any, information you want to learn.
- Complete surveys about the decisions you make.
- Possibly be invited to an interview with study staff to further discuss the decisions you make.
- Provide a blood or saliva sample and want to receive genetic testing results.
- Receive genetic test results (if applicable).
- Possibly be invited to complete additional surveys and/or interviews based on the results you receive.
You will be given a consent form that thoroughly explains all of the details of the study. A member of the study staff will review the consent form with you and will be sure that all of your questions are answered.
What are the good things that can happen from this research?
A genetic result that reveals risk for a disease can be important for your health and may be important for your family’s health. About 3 out of 100 participants in the study will learn about a disease risk for themselves.
What are the bad things that can happen from this research?
The risks associated with this study include the time and effort of completing the surveys, and potential loss of privacy. Participants may also experience discomfort when providing a saliva or blood sample. You may worry or feel concerned about learning genomic information.
Will you/your child be paid to be in this research study?
Participants will be paid between $25 to $180 depending on completion of surveys, interviews, and study visits.