title: Genetic research, adolescents, and informed consent.
abstract: The participation of adolescents in genetic research engenders unusual problems concerning the nature of their informed consent. In this study we analyze 70 consent documents collected from genetics investigators in the United States who conduct research with children and adolescents. We find that many consent documents do not reflect either the current or the developing ethical and legal standards for research with adolescents and that in many cases the documents are simply confusing or unclear. We make recommendations for change to reflect more adequately the changing perspective concerning the autonomous decision-making capacity of adolescents.
authors.affiliation: Department of Paediatrics and School of Religion, University of Iowa College of Medicine, Iowa City 52242, USA.
authors.forename: R F
authors.initials: RF
authors.lastname: Weir
authors.forename: J R
authors.initials: JR
authors.lastname: Horton
mesh_terms: D000293:Adolescent; D002648:Child; D032962:Consent Forms; D030881:Disclosure; D004992:Ethics, Medical; D035082:Federal Government; D005260:Female; D036281:Genetic Research; D005826:Genetics, Medical; D033161:Government Regulation; D006805:Human Experimentation; D006801:Humans; D007258:Informed Consent / Q000331:legislation & jurisprudence*; D007484:Iowa; D008499:Medical Records; D016743:Mental Competency; D033282:Parental Consent; D011247:Pregnancy; D011367:Professional Staff Committees / Q000592:standards; D035842:Research Subjects; D018570:Risk Assessment; D014481:United States; D014483:United States Dept. of Health and Human Services / Q000592:standards