We read with interest a recent article that appeared in the ARCHIVES regarding the ethics of predictive genetic screening for type 1 diabetes (T1D).1 Dr Ross nicely reviewed the status of newborn genetic screening for T1D, which is beginning to be offered at a statewide level in the United States. The primary purpose of newborn genetic screening is the identification of high-risk infants. Currently, more than 90% of parents consent. Babies at high risk (˜2%-10%) are recruited into natural history studies. The American Diabetes Association Position Statement indicates that genetic screening for T1D outside the context of research is not warranted.2 Dr Ross addressed the ethics of newborn genetic screening for a nonpreventable disorder, such as T1D. Her concerns included the psychosocial risks of predictive testing, the false assurance for children not considered to be at high risk, and proper informed consent.
Dorman JS, Charron-Prochownik D, Siminerio L, Ryan C, Poole C, Becker D, Trucco M. Need for Genetic Education for Type 1 Diabetes. Arch Pediatr Adolesc Med. 2003;157(9):935-936. doi:10.1001/archpedi.157.9.935-a