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The Pediatric Forum |

Need for Genetic Education for Type 1 Diabetes—Reply

Lainie F. Ross, MD, PhD
Arch Pediatr Adolesc Med. 2003;157(9):936. doi:10.1001/archpedi.157.9.935-a.
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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.24 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.

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