How to Know if You Have a Genetic Risk for Developing Type 1 Diabetes
If your parents or grandparents have type 1 diabetes, you might be worried that you have a genetic risk for developing the condition.
If you live with type 1 diabetes, you may be concerned that your child will have it too.
Are you right to be concerned? If you are, can you do something about it?
Knowledge is power, and understanding some of the factors that affect your risk of developing type 1 diabetes—including genetics—can help ease your worries.
Having a family history of type 1 diabetes increases the risk of developing the condition.
The American Diabetes Association (ADA) recommends that people who have a first-degree biological relative—a parent, sibling or child—living with type 1 diabetes get screened for autoantibodies. This type of screening can give you more information about your risk of developing type 1 diabetes.
What Autoantibody Screening Tells You About Your Genetic Risk for Developing Type 1 Diabetes
Autoantibody screening is not a diagnostic test for type 1 diabetes, but it can tell you your risk of developing type 1 diabetes.
To understand autoantibody screening, it helps to know a few things:
- Type 1 diabetes is an autoimmune condition.
- In type 1 diabetes, the immune system produces autoantibodies (i.e. abnormal antibodies that attack the body’s own tissues).
- These autoantibodies are indicators of early stages of type 1 diabetes.
- These autoantibodies target beta cells in the pancreas that produce insulin.
- Screening can detect autoantibodies—even if you don’t have any symptoms.
- These include autoantibodies to:
- Insulin
- Insulin islet cells
- GAD (glutamic acid decarboxylase, GAD65)
- Tyrosine phosphatase-related islet antigen 2 (IA-2) and IA-2β
- Zinc transporter
- These include autoantibodies to:
If you tested positive for two or more autoantibodies:
- Your risk of developing type 1 diabetes in the next 10 years is 75 percent.
- Your lifetime risk of developing type 1 diabetes is almost 100 percent.
How to Know If I Am at Genetic Risk for Developing Type 1 Diabetes?
According to the ADA, two million Americans live with type 1 diabetes—including 304,000 children and adolescents.
Some people—including those with a family history—are at higher risk of developing type 1 diabetes than others.
So how do you know if you are at genetic risk for developing type 1 diabetes?
You’re at higher risk of type 1 diabetes if you have a family history
Having a family history of type 1 diabetes doesn’t mean you’ll develop it. It depends on a combination of your genetics and environment:
- If a family member lives with type 1 diabetes, you inherit a predisposition to the condition—i.e. you’re more likely to develop it than someone with no family history.
- To develop type 1 diabetes—even with a genetic predisposition—something in your environment must trigger it.
According to the JDRF, almost 90% of people living with type 1 diabetes have no family history.
However, genes do play a role and you’re at higher risk of developing type 1 diabetes if a family member lives with the condition:
- If you don’t have a family history of type 1 diabetes, your risk of developing it is 1 in 300.
- If one of your parents has it, your risk increases to 1 in 20.
Your child is also predisposed to type 1 diabetes if you live with the condition
If you live with type 1 diabetes, your child’s risk of developing it is a bit more complex:
- If you’re a man, your child’s risk is 1 in 17.
- If you’re a woman and your child was born before you were 25, their risk is 1 in 25.
- If you’re a woman and your child was born after you were 25, their risk is 1 in 100.
- Your child’s risk is doubled if you developed type 1 diabetes before age 11.
- If both you and your partner have type 1 diabetes, your child’s risk is between 1 in 10 and 1 in 4.
Should I Get Screened for Type 1 Diabetes Autoantibodies?
Screening for type 1 diabetes has many benefits.
If you test negative:
- It means you’re not at high risk of developing type 1 diabetes, although some people are autoantibody-negative at diagnosis.
- You’ll have peace of mind.
If you test positive:
- Your doctor will want to monitor you more closely for the development of type 1 diabetes, which may include referral to a specialized center for further evaluation.
- Detecting type 1 diabetes in its early stages—before you have any symptoms—could lead to an early diagnosis. Early interventions could help delay the development of symptoms.
- Early diagnosis could help prevent life-threatening complications and hospitalization during diagnosis.
- You might be eligible to take part in type 1 diabetes research, including a clinical-trial testing the ability of a drug to delay or prevent type 1 diabetes in people who are at risk.
Think screening might be a good idea? Read Indigo’s and Jorge’s stories to find out why they chose to get screened.
Should My Child Get Screened for Type 1 Diabetes Autoantibodies?
If you live with type 1 diabetes, your child benefits from screening for the same reasons you do.
Also, earlier diagnosis thanks to autoantibody screening could help prevent diabetic ketoacidosis (DKA), a life-threatening but often preventable complication.
This is true for both children and adults, but especially important in children because:
- DKA is often the first manifestation of type 1 diabetes in children and adolescents.
- Up to 60 percent of children in the United States are in DKA when they are diagnosed with type 1 diabetes.
- Close follow-up of children with a genetic risk but no symptoms of type 1 diabetes—which includes autoantibody screening—facilitates early diagnosis of type 1 diabetes, which is associated with low rates of DKA.
Find out why Ginger chose to get her children screened for type 1 diabetes.
I’d Like to Get Screened to See If I Have a Genetic Risk for Type 1 Diabetes. What Do I Know?
Asking for screening is the first step toward learning more about your—or your child’s—risk of developing the condition.
Take advantage of these free resources:
TrialNet
TrialNet is an international network of leaders in type 1 diabetes research and clinical care with 27 centers in the United States.
TrialNet offers three convenient screening options and they will be able to confirm screening results. They may even suggest additional testing!
You can speak with an expert at TrialNet about your results by calling 1-800-425-8361.
T1Detect
T1Detect—JDRF’s screening education and awareness program—will arm you with the information you need before and after getting screened for type 1 diabetes autoantibodies.
They can help you understand why screening matters, how to get screened and what to do after getting results.
Your Doctor
Don’t hesitate to talk to your doctor about screening for type 1 diabetes!
Your doctor can order lab tests for you or your child to detect type 1 diabetes autoantibodies, which may be covered by your insurance.
Editor’s Note: Educational content about health equity and access is made possible with support from Abbott, makers of the Freestyle Libre 3 system, an active partner of Beyond Type 1 at the time of publication. Editorial control rests solely with Beyond Type 1.
