Need for Genetic Education for Type 1 Diabetes—Reply

In reply

I thank Dr Dorman and colleagues for sharing their thoughtful project to educate families and clinicians about genetic testing for type 1 diabetes. It is important that the project will focus on families with an affected biological relative, as their "high-risk" status changes the risk-benefit of genetic testing at this time when no preventive measures exist.

I agree with Dr Dorman and colleagues that the development of decision aids will be important for the translation of scientific information on type 1 diabetes from the bench to the community. Policy guidelines must be developed to ensure that the introduction of testing, both for research and clinical purposes, minimizes risks.¹ One consideration must be the appropriate community for such testing when no therapies exist. Children are a vulnerable population; infants, more so.^{2 - 4} Type 1 diabetes is the most common metabolic condition of childhood and, therefore, the inclusion of children in this research is important. In my article, however, I questioned whether the general newborn population is the appropriate community for study if there are plans to disclose risk information to families. I concluded that it was not.¹ In another article, I examine the ethics of prediction and prevention research in type 1 diabetes beyond the newborn period and how such research should be evaluated by institutional review boards given current federal regulations.⁵ The tools being developed by Dr Dorman and colleagues will help make type 1 diabetes research in high-risk families pass ethical review.