From Atlanta, Georgia, USA:
We have a son with Type 1 diabetes. I (the mom) have a brother with Type 1 and a first cousin with Type 1. I tested negative for the DPT-1 (antibody) test. On my husband's side there are no know cases of type 1, but my husband's father has a sister with type 2. My husband has not yet been had the DPT1 test done.
I get asked this a lot: should my son's first cousins (i.e., my brother's kids and my husband's sister's kids) be at all concerned that the possibility of diabetes may occur again? I realize that people may want to do the DPT1 to see if they have antibodies. Parents of the first cousins said diabetes skips generations so their kids have no chance of ever developing diabetes. I am not sure what to say (I hope that is true) except I am not sure exactly how it "runs" throughout families. Any thoughts would be appreciated.
The genetics involved in diabetes are very complicated and not fully worked out. Whatever the complexities the majority (around 90%) of new patients have no family history at all and even when there is someone in a family with Type 1, the risk of another family member being affected is usually low, on the order of 3-6%. Diabetes can occur in subsequent generations with the same order of risk.
My own view (and not everyone would agree) is that nobody should enter the DPT trials just to find out their antibody status. The only purpose of the trial is to establish if insulin (either injected or oral) can prevent or postpone diabetes in those shown to be at high risk. It is way too early to be recommending such treatment without a trial and all other potential preventative measures (nicotinamide, etc.) are in the same state. Therefore, unless you want to take part in a trial (when you may not receive an active preparation) there is no point in knowing your antibody status.
[Editor's comment: Some of the members of the Diabetes Team at Children with DIABETES have had some heated discussion about the issue of the appropriateness of people being tested for antibodies as part of the initial screening of the DPT-1 study, then declining to participate any further in the study. If someone does turn up with the ICA antibodies during testing, they clearly have the right not to participate. But is it appropriate to get "free" testing without having any in-depth knowledge of the study's design, and with the hidden preconceived notion that the person being tested will definitely refuse to participate if they test positive? It's an ethical issue. WWQ]
Original posting 11 Aug 1998
Posted to Genetics and Heredity
Last Updated: Tuesday April 06, 2010 15:08:57
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