Understanding family views on genetic testing for sickle cell disease

This study is asking parents and teenagers affected by sickle cell disease to share their thoughts about genetic testing. Researchers at St. Jude Children's Research Hospital want to understand what concerns families have, what they hope for, and how they feel about genetic research — especially since genetic testing is becoming more common in treatment options like gene therapy.

Researchers have noticed that Black families are sometimes less likely to enroll in genetic testing studies, even though other sickle cell families participate in research at high rates. This study exists to understand why — what questions families have, what worries them, and what they want to know — so that future research can better meet the needs of everyone in the sickle cell community.