Analysis of Patient Use, Understanding, and Decision-Making of Genomic Data
Katie Siek
Primary Investigator
Brief description of study
In this study, we want to learn how people who have had genomic testing understand and use their results. Genomic testing looks at your DNA to check for genetic changes that may affect your health or risk for certain conditions. We want to hear how this information shapes the choices you make and who you decide to share it with, like your doctor or family.
Our research team is looking for people who are 18+, live in the US, and have previously used genomic testing services (e.g., 23andMe, Ancestry.com, medical system genetic testing). Participants will engage in a 1 hour focus group session either online or in-person and receive a $20 Amazon gift card as compensation.
Location: In-person at Monroe County Library - Downtown Location or IU Bloomington campus, or online on Zoom.
Detailed description of study
First, you will fill out an intake survey with relevant background information (~15 minutes). Next, you'll fill out a verification survey (~2 minutes). These tasks will help determine if you qualify to participate.
What You’ll Do if You Join
If you are eligible and join the study, you will take part in small group discussions called focus groups.
- Attend one 15 minute pre-screening session, held online on Zoom.
- Attend one focus group session lasting 1 hour (either in-person at the Monroe County Public Library – Downtown Library or IU Bloomington campus, or online on Zoom). If you are attending an in-person focus group session, you will need to provide your own transportation.
During the sessions, a member of our research team will guide the discussion using questions and simple activities. You’ll be invited to share your thoughts and experiences about genomic text results and how you used the information and why. You can share as much or as little as you feel comfortable.
Please fill out the intake survey here if interested.
Eligibility of study
You may be eligible for this study if you meet the following criteria:
- Conditions: all
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Age: 18 years or above
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Gender: All
Adults (18+) residing in the US who have completed genomic testing