Why Adults at High Risk of Type 1 Diabetes Shrug Off Their Screening Results

When a blood test can reveal whether you carry the earliest biological signs of type 1 diabetes years before any symptom appears, one might expect the people who test positive to react with alarm. A new qualitative study from Denmark suggests the opposite: adults whose close relatives have the disease often respond to their screening results with striking calm, treating the information as trivia rather than a medical warning. The finding, published in Frontiers in Clinical Diabetes and Healthcare, challenges a core assumption of early detection programs—that delivering risk information automatically produces awareness, concern, and psychological preparedness.

The research team, based at Steno Diabetes Center Copenhagen, interviewed 28 adults aged 17 to 42 who were participating in DiaUnion, a Danish-Swedish screening initiative that targets first-degree relatives of people with type 1 diabetes. Denmark is currently the only country screening first-degree relatives rather than the general population, combining islet autoantibody testing with genetic screening and offering home-based blood sampling alongside digital follow-up. Participants were recruited at different stages of the process: fourteen were still awaiting results, seven had received negative results, and seven had tested positive for one or more autoantibodies. Semi-structured interviews, conducted by telephone, home visit, or clinic meeting between May and August 2025, were analyzed using reflexive thematic analysis.

The biological backdrop matters for understanding what participants were interpreting. Type 1 diabetes is an autoimmune disease in which the immune system progressively destroys the insulin-producing beta cells in the pancreatic islets of Langerhans, leading to absolute insulin deficiency and chronic hyperglycemia. The disease typically progresses silently for years but can be detected in its preclinical stages through blood tests for multiple islet autoantibodies and early signs of dysglycemia. One autoantibody carries roughly a 15 percent risk of developing the disease within ten years; two autoantibodies signal an almost 85 percent risk within fifteen years, and persistent presence of two or more is associated with nearly certain eventual onset. First-degree relatives carry a lifetime risk of about 5 to 10 percent, compared with roughly 0.3 percent in the general population, and adults account for more than half of all new diagnoses—yet most screening research has historically focused on children.

The first major theme the researchers identified concerns how family narratives shape risk perception. Participants whose parents had openly discussed and managed their diabetes during childhood tended to describe the condition as a familiar, integrated part of everyday life rather than a threat. One participant whose mother uses a pump sensor recalled measuring her own blood sugar as a kind of fun childhood activity and described feeling calm about whatever the screening outcome might be. But the researchers noted that this openness was selective: participants described positive experiences while rarely mentioning severe complications, suggesting that some parents practiced a form of protective disclosure, shielding children from the harder realities of the disease. The result is an inherited narrative in which diabetes appears controllable and relatively uncomplicated—a narrative that may contribute to underestimating its seriousness.

The opposite pattern also emerged. Participants who grew up watching a relative struggle with poorly controlled diabetes described childhood fear and a lifelong vigilance about anything that might raise or lower their chances of developing the disease. One participant whose father experienced repeated severe hypoglycemic episodes said the illness had frightened the family and created a desperate desire to avoid anything that might cause it. Concealment added another layer: when diabetes was treated as a family taboo, participants understood it not only as a physical illness but as something associated with shame. Some parents who had difficult experiences actively encouraged their adult children to join the screening program, which the researchers interpret as an attempt to break a family narrative linking diabetes with stigma.

A striking temporal misunderstanding ran through many accounts. Participants frequently anchored their perceived vulnerability to the age at which their parent was diagnosed. One participant noted that her mother developed diabetes at 33 and, with her own 32nd birthday approaching, felt the timing was suddenly relevant to her. Many others concluded that because they had passed the age at which their parent was diagnosed, they were no longer at meaningful risk. The researchers point out that type 1 diabetes can develop at any age and that this life-window framing of genetic susceptibility is biologically inaccurate—yet it serves a protective psychological function, allowing people who feel they have moved beyond the danger period to distance themselves from vulnerability.

The second theme revealed gaps in biomedical knowledge even among people with a close family member with the disease. Several participants believed type 1 diabetes occurs largely at random while type 2 diabetes is the hereditary form, leading them to underestimate their genetic risk. Many described maintaining healthy diets and exercise routines as a way to prevent type 1 diabetes from developing, even though there is currently no evidence that lifestyle behaviors prevent its autoimmune onset. The researchers interpret this emphasis on lifestyle through the lens of the Health Belief Model: focusing on controllable behaviors transforms an unmanageable genetic risk into something that feels predictable, providing emotional comfort and a sense of agency even when perceived control does not align with actual disease mechanisms. One participant acknowledged the possibility herself, wondering aloud whether her calm derived from a kind of false sense of security.

The third theme concerned how screening results themselves were interpreted. Participants repeatedly compared type 1 diabetes favorably to conditions they considered far more severe, particularly cancer, reasoning that people they knew lived normal lives with diabetes and that doctors knew how to handle it. The researchers describe this comparative framing as cognitive reframing—a coping strategy that creates psychological distance from fear by positioning diabetes as survivable and manageable, even though it may downplay the continuous, demanding self-management the disease actually requires. Participants also described diabetes as treatable, a word choice the researchers find telling, since type 1 diabetes is a chronic condition without a cure; what exists are management strategies, not remedies. The perception that medical progress has made the disease nearly curable appears to further reduce fear.

Perhaps most paradoxical was the attitude captured in the study’s title. One participant described the screening as something nice to know rather than need to know, saying the family could live just as good a life without the information. Others forgot they had even taken the test until the result arrived, and those who tested negative reported feeling neither relief nor gratitude—simply, now I know. Participants who tested positive for a single autoantibody often dismissed the result as not serious, positioning themselves outside what they perceived as the real risk group, despite the clinical significance of autoantibody positivity and the need for structured follow-up. Negative results were sometimes treated as definitive reassurance, including reassurance about not having passed genetic risk to children, even though a negative screening result represents only a point-in-time indication rather than a permanent all-clear.

The researchers argue that this downplaying should not be read simply as a failure of knowledge transmission but as active meaning-making. For adult first-degree relatives, familial risk is not new information but a pre-existing condition of life, already managed through normalization, reframing, and perceived controllability. A positive result may feel less like disruptive news and more like confirmation of something long expected, making it psychologically easier to integrate than to reconstruct one’s self-understanding around future disease. Notably, the study’s companion findings on parents of screened children showed a different pattern: those parents engaged with screening as a tool for managing fear and preparing for their child’s possible diagnosis, whereas the adults screened for themselves relied on strategies that normalize and minimize risk.

The practical implications are significant for the growing field of early detection, which has been energized by immunomodulatory therapies such as teplizumab, approved by the European Medicines Agency in January 2026, that can delay clinical onset. The authors conclude that standardized risk communication is insufficient because individuals filter information through established personal and familial narratives. Screening programs, they argue, should adopt more individualized approaches that engage with participants’ existing frameworks of understanding, and should not assume that an absence of expressed need for support means an absence of psychological burden—concerns may simply be managed invisibly through coping strategies that keep them out of sight.

Subject of Research: Risk perception and psychosocial experiences of adult first-degree relatives participating in early detection screening for type 1 diabetes

Article Title: “This is going to be a nice-to-know, not a need-to-know”: absence of concern – a qualitative study of risk perception in early detection of type 1 diabetes

Article References: Pedersen, E. B., Flarup, P. B., Jespersen, L. N., Due-Christensen, M., Antvorskov, J. C., Pociot, F., & Grabowski, D. (2026). “This is going to be a nice-to-know, not a need-to-know”: absence of concern – a qualitative study of risk perception in early detection of type 1 diabetes. Frontiers in Clinical Diabetes and Healthcare, 7, Article 1925120. https://doi.org/10.3389/fcdhc.2026.1925120

Image Credits: AI Generated

DOI: 10.3389/fcdhc.2026.1925120

Keywords: type 1 diabetes, early detection, autoantibody screening, risk perception, first-degree relatives, qualitative research, DiaUnion, psychosocial, health communication, coping strategies, preventive medicine, Denmark