Screening Your Family: Type 1 Diabetes Testing for First-Degree Relatives

When someone is diagnosed with type 1 diabetes, one of the first questions family members often ask is, "Could this happen to me too?" Having a first-degree relative (a parent, sibling or child) with type 1 diabetes (T1D) raises your own risk compared to the general population. The good news is that a simple blood test can now tell you a great deal about that risk, often years before any symptoms appear. Below are some questions you might ask:

What is the risk of a particular family member developing type 1 diabetes?

Why does screening matter?

T1D develops slowly as the immune system gradually targets the insulin-producing cells in the pancreas. This process can be detected early through a blood test, before blood sugars rise or symptoms begin. Catching it early gives families time to prepare, avoid the life-threatening complication of DKA (diabetic ketoacidosis), and consider treatments that may delay the disease.

What does the blood test look for?

T1D is caused by an immune response where the body attacks its own pancreas using “autoantibodies.” There are 4 to 5 autoantibodies that can be screened for, having two or more of these antibodies means T1D is very likely to develop eventually, while one antibody carries a lower risk.

How can I or my children be screened?

Fortunately, there are many options to be screened! If you feel you or a family member are eligible for screening based on an affected family member, you can:

• Ask your primary care physician (PCP) about sending labs for autoantibodies
  • Your PCP may either send you for labs themselves or refer you to Endocrinology to obtain lab work
• Research programs such as TrialNet and ASK can send you at-home test kits for evaluation.

If I test positive, other than screening is there anything that can be done?

There are three main stages of T1D, with stage 3 being the most advanced stage. For people found to be in the early stages, there is now an approved medication (Teplizumab) that can delay the onset of insulin-dependent diabetes. There are also research studies exploring additional therapies. Early screening opens the door to these options now and in the future.

What else should I think about when deciding to screen myself or a family member?

Learning about your risk can bring peace of mind, but for some families it can also bring worry or anxiety. It can help to talk through what a positive or negative result would mean for you before deciding to test. Finding out you are at high risk of developing a chronic disease such as T1D can be difficult, and it is very important to seek out support to discuss these feelings.