Related Experiment Video
Updated: Aug 11, 2026
Assessment and Evaluation of the High Risk Neonate: The NICU Network Neurobehavioral Scale
Published on: August 25, 2014
Minimizing risks: the ethics of predictive diabetes mellitus screening research in newborns
1Department of Pediatrics and MacLean Center for Clinical Medical Ethics, The University of Chicago, 5841 S Maryland Ave, MC 6082, Chicago, IL 60637, USA. lross@uchicago.edu
Insights
Newborn screening for type 1 diabetes (T1DM) involves ethical considerations. Research should avoid disclosing results unless a prevention strategy exists or the infant has a family history of T1DM.
Area of Science:
- Pediatric Endocrinology
- Genetic Research Ethics
- Metabolic Disease Research
Background:
- Type 1 diabetes mellitus (T1DM) is a prevalent childhood metabolic disease.
- Newborn screening for genetic predisposition to T1DM is available in select states.
- Current T1DM screening lacks preventive treatments, focusing on risk identification and follow-up studies.
Purpose of the Study:
- To examine the ethical implications of predictive genetic research for T1DM in newborns.
- To address the psychosocial impact of genetic predisposition findings.
- To propose guidelines for ethical research conduct in this area.
Main Methods:
- Ethical analysis of predictive genetic research protocols for T1DM.
- Review of existing newborn screening practices and their ethical frameworks.
- Consideration of psychosocial factors in research design.
Main Results:
- Predictive genetic research in newborns carries significant psychosocial risks.
- Disclosure of results necessitates careful consideration of potential harm.
- Research designs must be sensitive to the implications for infants and families.
Conclusions:
- For T1DM predictive research without prevention, withholding results is recommended to minimize harm.
- If result disclosure is essential, research should be limited to newborns with a first-degree relative affected by T1DM.
- Ethical guidelines are crucial for balancing research advancement with participant welfare.
Abstract:
Type 1 diabetes mellitus is the most common metabolic disease of childhood. Two states offer newborn screening to identify children with a genetic predisposition to it. It is a voluntary test offered in conjunction with the mandatory newborn metabolic screening. There are no preventive treatments, but children discovered to be at increased risk may participate in follow-up studies to determine whether and when the child develops autoantibodies (preclinical disease) or overt diabetes. This study examined the ethics of predictive genetic research in newborns for type 1 diabetes. Prediction research has serious psychosocial implications, and research designs must account for them. The study concluded that, to minimize harm to infants and their families, (1) if the research does not incorporate a prevention strategy, studies should avoid disclosure of results; and (2) if disclosure is necessary, then the research should be restricted to newborns with an affected first-degree relative.
Related Concept Videos
01:22Diabetes Mellitus: Type 2 and Gestational
01:20Pathophysiology of Diabetes
Type 1 diabetes is characterized by autoimmune-mediated destruction of pancreatic β cells, with environmental factors potentially triggering this process in genetically susceptible individuals. Despite many not having a family history, certain genes increase susceptibility, suggesting a...