Family history alone may not prompt type 1 diabetes screening, survey finds

Despite having a first-degree family history of type 1 diabetes (T1D), many adults and caregivers underestimate their own or their child's likelihood of developing the disease, according to a new national survey from Beyond Type 1 commissioned by Sanofi.^1,2

The Family Factor: A T1D Risk Awareness Survey evaluated awareness of T1D risk, misconceptions surrounding the disease, and attitudes toward autoantibody screening among adults and caregivers with a first-degree family member affected by T1D. The findings suggest that knowledge gaps remain common even among families already familiar with the disease and may contribute to delays in conversations about early detection.

Among respondents, 26% did not believe they or their child were at increased risk of developing T1D despite having a first-degree relative with the condition. In addition, 31% were unaware that family history increases an individual's risk of developing T1D.

The survey was fielded online by Ipsos between April 1 and May 1, 2026, and included 1,000 US adults at risk for T1D and caregivers of at-risk children. Eligible participants either had a first-degree family member with T1D or cared for a child with a first-degree family member affected by the disease. Individuals who had previously undergone T1D autoantibody screening were excluded from participation.

According to Kristian Hurley, executive vice president of Social Impact and Global Advocacy at Beyond Type 1, the findings demonstrate that living in a family affected by T1D does not necessarily translate into understanding personal risk.

"A type 1 diabetes diagnosis can reverberate through an entire family, raising new questions about risk, screening and what comes next. These findings show the need for clearer education, trusted guidance and easier pathways to screening, so families can better understand their options and make informed decisions."

What misconceptions are shaping families' understanding of T1D?

The survey found that misunderstandings about who develops T1D, what causes it, and when screening is appropriate remain widespread.

Nearly two-thirds (63%) of respondents believed T1D is primarily diagnosed during childhood, despite adults accounting for approximately 60% of new diagnoses each year. More than one-third (38%) incorrectly believed that lack of physical activity is a risk factor for T1D, reflecting continued confusion between type 1 and type 2 diabetes. Meanwhile, 26% believed autoantibody screening is only possible after symptoms appear, and 31% thought screening could only be performed through specialists.

The survey also identified limited awareness of diabetic ketoacidosis (DKA), one of the most serious complications associated with delayed diagnosis. More than one-quarter (28%) of respondents reported they had either never heard of DKA or did not know what it was.

Shara Bialo, MD, senior medical director at Sanofi and a practicing pediatric endocrinologist, said the results illustrate misconceptions that pediatricians encounter frequently in clinical practice.

"The survey highlighted that many T1D families still grapple with longstanding misconceptions about who's at risk and how to act."

Bialo emphasized that T1D differs fundamentally from type 2 diabetes.

"However, type 1 diabetes is an autoimmune disease in which the immune system attacks the insulin-producing beta cells of the pancreas. It is not caused by eating too much sugar, and neither children nor parents are responsible for causing it."

She also noted that misconceptions extend beyond disease causation.

"Another misconception is that T1D is exclusively a childhood disease, when in fact, it can develop at any age."

Why are many families hesitant to pursue screening?

Although concern about developing T1D was high among respondents, that concern did not consistently translate into plans for screening.

Overall, 82% of respondents said they were concerned about their own or their child's risk of developing T1D. However, 46% said they were either not considering T1D autoantibody screening or had not yet decided whether they would pursue screening during the next 6 months.

The findings suggest that hesitation stems from both emotional and practical concerns.

Among respondents who were uncertain about screening, 21% said a positive screening result would create substantial anxiety for themselves or their child. Nineteen percent of caregivers reported they would feel guilty if their child developed T1D because they would believe it was their fault. One in 10 respondents preferred not to know about future health risks altogether.

Practical barriers also emerged. Eighteen percent of respondents said they did not know how to obtain screening, while 17% said they would not know what to do if screening identified increased risk. Nearly one-quarter (23%) reported that because they or their child were healthy, they preferred to wait until something changed before considering screening.

Bialo said pediatricians should recognize these concerns as legitimate rather than assuming families simply lack motivation.

"The first step is to acknowledge that these concerns are completely understandable. Screening a child for a chronic autoimmune disease can feel overwhelming."

Drawing from both her professional and personal experience, Bialo noted that families benefit from conversations that allow them to ask questions and understand what screening can and cannot provide.

"While knowledge doesn't eliminate the emotional weight of the decision, pediatricians can help by creating space for open conversations that address families' biggest questions and next steps. A balanced discussion should explain both the benefits and the limitations of screening."

What role can pediatricians play?

The survey findings suggest pediatricians may have opportunities to expand conversations beyond family history and include discussions about early detection.

Although 62% of respondents said a physician had discussed their own or their child's increased T1D risk, only 28% of respondents familiar with autoantibody screening reported that their physician had initiated a discussion about screening itself.

According to Bialo, this gap between discussions about risk and discussions about screening may contribute to uncertainty about whether screening is appropriate and what its potential value may be.

The survey also found that physician guidance appears to influence decision-making. Fifty-six percent of respondents identified a doctor's recommendation as one of the strongest factors motivating them to pursue screening. Additional motivators included learning more about the screening process (49%), learning more about T1D (42%), hearing from others who had undergone screening (37%), and knowing support would be available afterward (30%).

Education itself appeared to have a measurable effect. Eighty-five percent of respondents said they were more likely to pursue screening after learning that they or their child were at increased risk of developing T1D.

Bialo said these findings reinforce the influence pediatricians can have through routine conversations with families.

"The Family Factor survey gives us an important window into the minds of at-risk families – highlighting that while education drives intent, support from healthcare providers and those in the T1D community remain foundational drivers for action. These survey findings can help healthcare providers better understand the barriers first-degree family members face, so that we can bridge the gap between awareness and follow-through."

She added that pediatricians should not feel pressured to provide every detail during a single office visit.

"Pediatricians don't have to cover every detail in one visit; the goal is simply to start the conversation."

Bialo noted that increasing awareness before symptoms develop may help families recognize risk earlier and seek evaluation before an acute presentation.

"Earlier awareness gives families the opportunity to recognize risk, seek evaluation sooner, and potentially change the diagnosis experience from a medical emergency to a planned conversation with their healthcare team."

The survey findings suggest that although awareness of T1D risk remains incomplete among many families with an affected first-degree relative, education delivered during routine pediatric care may help address misconceptions, clarify the purpose of screening, and support informed decision-making before symptoms emerge.

References

1. Beyond Type 1. The Family Factor: A T1D Risk Awareness Survey. Commissioned by Sanofi. Survey conducted by Ipsos April 1-May 1, 2026. Published June 2026.

2. Beyond Type 1. New survey highlights awareness gaps among type 1 diabetes families that can create barriers to action. News release. July 20, 2026. Accessed July 30, 2026. https://www.prnewswire.com/news-releases/new-survey-highlights-awareness-gaps-among-type-1-diabetes-families-that-can-create-barriers-to-action-302828805.html?tc=eml_cleartime