ABOUT THE DIG FASD RESEARCH STUDY
The purpose of the “Dissecting the Genetic Contributions to Fetal Alcohol Spectrum Disorders” (DiG FASD) study is to understand how genetics affects FASD. We hope that this will improve treatments and interventions for FASD in the future.
Researchers at Indiana University are recruiting adults and children of any age who were exposed to alcohol before birth or who have an FASD diagnosis. Adopted people and families are welcome.
- We will ask you for your contact information, demographic information (such as age, gender, and race), and any information you might know about your prenatal alcohol exposure, or any previous FASD evaluations.
- We will ask you to take photos of yourself.
- We will ask you to provide a saliva sample for genetic research.
- We will analyze the photos and genetic information (DNA) to better understand how the combination of genetics and prenatal alcohol exposure might affect facial features.
- You can do EVERYTHING from home from anywhere in the world. There are no in-person visits.
- There is no cost to you. Participants who complete the study receive a gift card worth $50 or more.
Security and Confidentiality
All the information and the photographs you provide will be kept confidential and secure, and will be used for research purposes only. No photographs or personally identifying information (such as name, address, or telephone number) from this study will be published.
This research is covered by a Certificate of Confidentiality through the National Institutes of Health, which provided funding for this study. Under the Certificate of Confidentiality, we are not allowed to share ANY information (including genetic information) about you (or your child) with the criminal justice system unless you give us permission. The only exception is that we are required by law to disclose child abuse and communicable diseases. We will only share genetic information and pictures of you (or your child) with other researchers after we have removed personally identifying information (like names). These researchers must ask for permission to use this information, must agree to keep your information private and confidential, and are only allowed to use the information for research purposes.
FASD is common, with rates as high as 4.8% in the United States. This makes FASD a pressing healthcare concern. However, widely available, effective interventions and treatments for FASD do not currently exist. We hope that the results of this study will help us better understand how genetic differences between people might explain different outcomes in FASD. For example, some genetic differences may protect some individuals against prenatal alcohol exposure. This may lead to improved treatments and interventions for people with FASD in the future. By participating:
- You are helping researchers better understand the FASD spectrum and why there is so much variation in FASD.
- You are part of the first world-wide genetic research study on FASD that is investigating genetic differences in FASD outcomes.
- You may be helping researchers develop better treatments and interventions for FASD in the future.