title: Parents want to know if their child is at high risk of getting diabetes.
abstract: Not least among professionals, voices have been raised against screening research projects, which have been regarded as involving a risk of being unethical as they may disturb, scare, or even harm the included people without giving enough benefit. This problem with large-scale screening should be especially pronounced if increased risk of a serious disease like type 1 diabetes is identified when no effective prevention is available, and even more problematic if children were involved. ABIS (All Babies in Southeast Sweden) is a screening project including 17,000 newborn babies in the general population, followed prospectively to identify children at risk to get diabetes, and to study the influence of environmental factors causing the disease process. Four hundred randomly selected ABIS families received a questionnaire on attitudes and ethical questions regarding the project to be answered anonymously: 293/400 (73.3%) answered; 279/293 (95.3%) stated that they regarded it their right to be informed of results in the study and 278/293 (94.9%) said they really want to know. In fact, 254/293 (86.7%) report wanting to know if their child has increased risk of getting diabetes even if there is no preventive measure available. This clear result supports the view that this type of study may well be ethically justified as long as informed consent can be given based on adequate understanding and voluntariness. The results may have implications for the design of future screening studies.
authors.affiliation: Division of Pediatrics, Department of Molecular and Clinical Medicine, Faculty of Health Sciences, Linköping University, Linköping, Sweden.
authors.forename: U
authors.initials: U
authors.lastname: Gustafsson Stolt
authors.forename: P-E
authors.initials: PE
authors.lastname: Liss
authors.forename: J
authors.initials: J
authors.lastname: Ludvigsson
mesh_terms: D000328:Adult; D002648:Child; D002675:Child, Preschool; D015331:Cohort Studies; D003922:Diabetes Mellitus, Type 1 / Q000453:epidemiology*; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D010290:Parents / Q000523:psychology*; D011446:Prospective Studies; D012307:Risk Factors; D011795:Surveys and Questionnaires; D013548:Sweden / Q000453:epidemiology