title: Predictors of adolescents' consent to use health records for research and results from data collection in a Swedish twin cohort.
abstract: BACKGROUND
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Medical Epidemiology and Biostatistics,Karolinska Institutet,Stockholm,Sweden.
authors.forename: Vilhelmina
authors.initials: V
authors.lastname: Ullemar
authors.affiliation: Department of Medical Epidemiology and Biostatistics,Karolinska Institutet,Stockholm,Sweden.
authors.forename: Cecilia
authors.initials: C
authors.lastname: Lundholm
authors.affiliation: Department of Medical Epidemiology and Biostatistics,Karolinska Institutet,Stockholm,Sweden.
authors.forename: Anne K
authors.initials: AK
authors.lastname: Örtqvist
authors.affiliation: Department of Clinical Neuroscience & Centre for Psychiatric Research,Karolinska Institutet,Stockholm,Sweden.
authors.forename: Clara Hellner
authors.initials: CH
authors.lastname: Gumpert
authors.affiliation: Centre for Ethics,Law and Mental Health (CELAM),University of Gothenburg,Gothenburg,Sweden.
authors.forename: Henrik
authors.initials: H
authors.lastname: Anckarsäter
authors.affiliation: Centre for Ethics,Law and Mental Health (CELAM),University of Gothenburg,Gothenburg,Sweden.
authors.forename: Sebastian
authors.initials: S
authors.lastname: Lundström
authors.affiliation: Department of Medical Epidemiology and Biostatistics,Karolinska Institutet,Stockholm,Sweden.
authors.forename: Catarina
authors.initials: C
authors.lastname: Almqvist
mesh_terms: D000293:Adolescent; D000294:Adolescent Behavior; D000328:Adult; D000886:Anthropometry; D015982:Bias; D015331:Cohort Studies; D003299:Cooperative Behavior; D003625:Data Collection; D004200:Diseases in Twins / Q000453:epidemiology; D004522:Educational Status; D005260:Female; D006801:Humans; D007258:Informed Consent; D008297:Male; D008423:Maternal Age; D008499:Medical Records; D008875:Middle Aged; D010290:Parents / Q000193:education; D010331:Paternal Age; D000297:Psychology, Adolescent; D045808:Refusal to Participate; D012106:Research; D012572:School Health Services / Q000706:statistics & numerical data; D012737:Sex Factors; D035781:Siblings; D011795:Surveys and Questionnaires; D013548:Sweden / Q000453:epidemiology; D014429:Twins, Dizygotic / Q000523:psychology* / Q000706:statistics & numerical data; D014430:Twins, Monozygotic / Q000523:psychology* / Q000706:statistics & numerical data; D055815:Young Adult
keywords: epidemiology; informed consent; medical records; research participation; twin cohort