Ethical issues in youth surveys: potentials for conducting a national questionnaire study on adolescent schoolchildren's sexual experiences with adults.
(25/200)OBJECTIVES: We evaluated ethical constraints concerning youth surveys on child sexual abuse (CSA). METHODS: We reviewed internationally published studies and Danish regulations concerning school-based surveys conducted without active parental consent. RESULTS: Ethical constraints concerning participants in youth community studies have been scantily assessed. Danish legislation accords minors the right to be heard on issues concerning themselves. The anticipated societal benefits of children's participation in community studies justify conducting anonymous surveys among schoolchildren based upon their own informed consent. CONCLUSIONS: No ethical or legal objections were found to conducting an anonymous survey in Denmark on CSA among 9th-grade pupils without parental consent, provided that the survey was accompanied by an offer of counseling. (+info)
State legislative efforts to regulate use and potential misuse of genetic information.
(26/200)The purpose of this study was to review existing and proposed legislation specifically intended to regulate the collection, use, and potential misuse of genetic data. The study encompasses laws relating to confidentiality, informed consent, discrimination, and related issues. It excludes from consideration legislation relating to medical records generally that may bear indirectly on genetic information. It also excludes both legislation relating to the regulation of DNA data collection for law enforcement purposes and state laws relating to the confidentiality of data collected by newborn-screening programs. While relatively few laws that explicitly regulate the treatment of genetic information have been enacted to date, a considerable amount of activity is currently underway in the nation's legislatures. Although most of the bills under consideration are not comprehensive in scope, they reflect a growing societal awareness that the uncontrolled dissemination and use of genetic data entails significant risks. (+info)
Canaries in the mines: children, risk, non-therapeutic research, and justice.
(27/200)The Kennedy Krieger lead paint study received a lot of attention after a US Court of Appeals ruled that a parent cannot consent to the participation of a child in non-therapeutic research. The ruling has raised fears that, if it goes unchallenged, valuable research might not proceed and ultimately all children would be harmed. The author discusses significant aspects of the study that have been neglected, and argues that the study was unethical because it involved injustice and its design meant that the study lacked importance and value. Issues of benefit, risk, and consent are vital, but it is sometimes a mistake to consider these issues before settling questions about justice and the importance and value of a research project. The author concludes by offering a strategy for researchers and reviewers of research to appreciate, in a vivid way, the implications of research participation. (+info)
Childhood malignancies and decision making.
(28/200)Failure to obtain "adequate" medical care for a child constitutes child neglect, which may be used as the basis for prosecution of parents, removal of the child from the home, or court-ordered medical treatment. "Adequate" care is usually construed as that which is given by a licensed physician, but, in case of dispute, courts almost never engage in choosing one medical approach over another. The principle that parents may not refuse medical care, however, is made very difficult when children have malignancies--the long-term nature of the treatment means that, if the child is left at home, court order or not, the parents may flee with their child. Removing the child from the home, however, adds that trauma to the ill child's burdens. Questions should be asked before making a request to a court to order a therapy which will prolong but not save a child's life if the parents would prefer to spare their child the side effects. Parents, however, may always refuse to permit their child to participate in research studies, no matter how promising. Adolescents are increasingly believed to be capable of medical decision making; most courts, however, would not allow an adolescent to refuse life-saving treatment. (+info)
Neonatal research: the parental perspective.
(29/200)OBJECTIVES: To investigate the recollections of parents consenting for their infants to be research subjects and determine their views about the need for consent. SUBJECTS: Parents of 154 sick newborn infants enrolled in a randomised trial in the early neonatal period. All parents had given written consent and received printed information. METHODS: A questionnaire and accompanying letter was sent to the parental home 18 months later. Non-responders were sent a further questionnaire and letter. RESULTS: Response rate was 64% (99/154). Some respondents (12%) did not remember being asked to consent to their baby joining a study, and a further 6% were unsure. Most of the respondents (79%) were happy, 13% neutral, and 8% unhappy with their decision to give consent. None felt heavy pressure to agree. Entering the trial caused 24% of respondents to feel more anxious, 56% neutral, and 20% less anxious about their baby. Most of the respondents (83%) would be unhappy to forgo the consent process for trials passed by the institutional ethics committee. CONCLUSIONS: A significant proportion of parents who give written consent for a trial in the early neonatal period do not later remember having done so. Parents who have had experience of neonatal research would be unhappy for their baby to be enrolled in a study that had ethics committee approval without their consent being obtained. (+info)
Fertility and parental consent for minors to receive contraceptives.
(30/200)OBJECTIVES: I examined the effect of imposing a requirement for parental consent before minors can receive medical contraceptives. METHODS: Birth and abortions among teens, relative to adults, in a suburban Illinois county that imposed a parental consent requirement in 1998 were compared with births and abortions in nearby counties during the period 1997-2000. RESULTS: The relative proportion of births to women under age 19 years in the county rose significantly compared with nearby counties, whereas the relative proportion of abortions to women under age 20 years declined insignificantly, with a relative increase in the proportion of pregnancies (births and abortions) to young women in the county. CONCLUSIONS: Imposing a parental consent requirement for contraceptives, but not abortions, appears to raise the frequency of pregnancies and births among young women. (+info)
Do Fourteenth Amendment considerations outweigh a potential state interest in mandating cochlear implantation for deaf children?
(31/200)Currently, the decision concerning pediatric cochlear implantation for children remains a personal choice for parents to make. Economic factors, educational outcomes, and societal attitudes concerning deafness could result in an increased governmental interest in this choice. This article examines case law related to the issue of parental autonomy to determine whether the state, acting in the role of parens patriae, could use economic and social reasons to mandate the provision of cochlear implants for all eligible children. The author uses previous cases as a framework to develop an opinion on whether a constitutional protection for parents may exist. (+info)
Research issues in genetic testing of adolescents for obesity.
(32/200)Obesity is often established in adolescence, and advances are being made in identifying its genetic underpinnings. We examine issues related to the eventual likelihood of genetic tests for obesity targeted to adolescents: family involvement; comprehension of the test's meaning; how knowledge of genetic status may affect psychological adaptation; minors' ability to control events; parental/child autonomy; ability to make informed medical decisions; self-esteem; unclear distinctions between early/late onset for this condition; and social stigmatization. The public health arena will be important in educating families about possible future genetic tests for obesity. (+info)