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Predictors of Adolescents' Consent to Use Health Records for Research and Results from Data Collection in a Swedish Twin Cohort

Journal article
Authors V. Ullemar
C. Lundholm
A. K. Ortqvist
C. H. Gumpert
Henrik Anckarsäter
Sebastian Lundström
C. Almqvist
Published in Twin Research and Human Genetics
Volume 18
Issue 3
Pages 256-265
ISSN 1832-4274
Publication year 2015
Published at Gillberg Neuropsychiatry Centre
Centre for Ethics, Law, and Mental Health
Pages 256-265
Language en
Keywords research participation, medical records, informed consent, epidemiology, twin cohort, SELECTION BIAS, OBSERVATIONAL RESEARCH, REPRESENTATIVENESS, INFORMATION, REGISTRY, LINKING, CHILD, Genetics & Heredity, Obstetrics & Gynecology
Subject categories Obstetrics and gynaecology, Genetics


Introduction: Non-random selection into a study population due to differences between consenters and non-consenters may introduce participation bias. Past investigations of factors predicting consent to collection of medical health records for research imply that age, sex, health status, and education are of importance for participation, but disagree on the direction of effects. Very little is known about influences on consent from adolescents. Methods: Two cohorts of Swedish 15-year-old twins (total n = 4,611) previously invited to the Child and Adolescent Twin Study in Sweden (CATSS) responded to a questionnaire with information on sex, individual's health, height, weight, and parental factors. The questionnaire included a question for consent to collection of medical health records. Predictors for consent were analyzed using logistic regression. Additionally, regional differences in the collection of health records of consenters were evaluated. Results: Males were significantly less likely to consent compared to females (OR 0.74, 95% CI 0.64-0.85). The twin siblings' decision to consent was strongly associated with consent (OR 10.9, 95% CI 8.76-13.5), and individuals whose parents had responded to the original CATSS study were more likely to consent to record collection at age 15 (OR 2.2, 95% CI 1.81-2.75). Results of the subsequent collection of consenters' medical health records varied between geographical regions of Sweden. Conclusion: We identified several predictors for adolescents' consent to collection of their medical health records. Further selection was introduced through the subsequent record collection. Whether this will induce participation bias in future studies depends on the research questions' relationship to the identified predictors.

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