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Differential attrition rates and active parental consent.

Active parental consent in survey research poses ethical and practical concerns. One common argument against the requirement of active consent procedures is its effect on participation rates. There is additional concern that higher risk groups may be underrepresented in the final sample. Empirical support of differential attrition, however, is lacking. In the current multisite longitudinal study, passive consent procedures were approved for the collection of pretest data. For subsequent years of data collection, active parental consent procedures were required. In this article, we use the pretest data to examine demographic, attitudinal, and behavioral differences between those students for whom active consent was provided and those for whom active consent was either denied or for whom no response was received. The results indicate that active consent procedures produce deleterious effects on participation rates and lead to an underrepresentation of at-risk youth in the sample.

Adolescent↗

Characteristics of adolescents who provide neither parental consent nor refusal for participation in school-based survey research.

Schools offer a convenient setting for research on adolescents. However, obtaining active written parental consent is difficult. In a 6th-grade smoking study, students were recruited with two consent procedures: active consent (parents must provide written consent for their children to participate) and implied consent (children may participate unless their parents provide written refusal). Of 4,427 invited students, 3,358 (76%) provided active parental consent, 420 (9%) provided active parental refusal, and 649 (15%) provided implied consent (parental nonresponse). The implied consent procedure recruited more boys, African Americans, students with poor grades, and smokers. This dual-consent procedure is useful for collecting some limited data from students who do not provide active consent or refusal.

Adolescent↗

Parent and adolescent perceived need for parental consent involving research with minors.

OBJECTIVE: To assess parents' and adolescents' perceived need for parental consent for minor adolescents to participate in minimal risk research studies based on procedural invasiveness (anonymous surveys, interviews, and blood or urine testing) and sensitivity of the topics (sexuality, drug and alcohol use, and sexually transmitted diseases and human immunodeficiency virus [HIV]). METHODS: An anonymous self-report questionnaire was administered to 100 adolescent-parent pairs at 2 clinical sites (urban and suburban) of Children's Hospital of Michigan in Detroit. RESULTS: By invasiveness of the research procedure, the proportions of parents and adolescents who perceived a need for parental consent were as follows: face-to-face interviews, 62% vs 48%; telephone interviews, 72% vs 46%; blood or urine testing, 77% vs 62%; and blood testing for HIV status, 78% vs 59%. These differences were only significant for telephone interviews and HIV blood testing. For anonymous surveys, a minority of parents (33%) and adolescents (26%) reported that parental consent was needed. Based on sensitivity of the research topics, the proportions of parents and adolescents who perceived a need for parental consent were as follows: sexuality, 60% vs 34%; drug and alcohol use, 56% vs 44%; contraception, 62% vs 46%; and sexually transmitted diseases and HIV testing, 56% vs 52%. These differences were only significant for sexuality. Parents with higher education believed that teens could give their own consent (P < .05). Fifty-seven percent of parents and their teens agreed that parental consent for anonymous surveys was not necessary. For more invasive procedures and more sensitive topics, the percentage of disagreement ranged from 28% to 55.5%. CONCLUSIONS: There is a greater perceived need for parental consent to adolescent participation in research studies among parents than among teens for more invasive procedures and more sensitive topics. These results suggest the need for sensitivity to differing adolescent and parental perceived need for parental consent for a minor adolescent to participate in such studies. Further studies with larger samples are needed to determine what factors influence diverse parent and adolescent opinions.

Acquired Immunodeficiency Syndrome↗

Missouri's parental consent law and teen pregnancy outcomes.

The Supreme Court decision of July 1989 upholding state regulation of abortion has led to numerous attempts to impose parental consent and/or parental notification legislation for females under the age of 18 seeking abortions. The effect of such legislation on teen pregnancy outcomes is hotly debated. Missouri vital statistics data from 1980 through 1992 are examined for the effect of such a law on pregnancy resolution choices among teens. The Missouri data suggest that since the enforcement of the parental consent statute in 1985 there has been a decrease in the selection of abortion as a pregnancy outcome, particularly among white teens. In addition there has been an increase in the percent of abortions among teens taking place in other states and an irregular but steady trend toward later abortions. The increasing number of births to unmarried mothers under the age of 18 suggest the need for specific services to help these young mothers cope.

Abortion, Induced↗

Parental consent and adolescent risk behavior research.

PURPOSE: To identify methodological issues related to the use of active or passive parental consent in school-based research on adolescent risk behavior research and to propose recommendations consistent with current legal and ethical standards in the United States. METHODS: Review and synthesis of the professional literature related to adolescents and parental consent, federal regulations and guidelines in the United States, and the author's experience presenting these arguments and issues to institutional review boards and funding agencies for over 10 years. FINDINGS: The procedures used for parental consent affect a study's participation rates, costs, and selection bias. When active parental consent is required, parental permission is typically obtained for only 30%-60% of students, compared to 93%-100% when passive consent is used. Extensive follow-up may result in 55%-100% of parents giving permission, but at significant cost (typically $20-$25 per student). Active consent results in the exclusion of minorities, students having problems in school, and students already engaged in or at risk for problem behaviors. Strong methodological reasons were identified for using passive parental consent procedures when possible. Current federal regulations include four areas for possible waiver or alterations in parental consent procedures, including the use of passive parental consent. CONCLUSIONS: Health researchers must understand the methodological, legal, and ethical issues related to parental consent to produce high-quality, valid research about adolescents and to provide evidence for laws, policies, and regulations.

Adolescent↗

[Pediatric autopsy and informed parental consent].

AIM: In French legal terminology, the definition of autopsy is "organs'withholding". This phrase is ambiguous, meaning both removing the organs for their macroscopic exam and their retention for subsequent histology. The autopsy of a child requires an informed consent from both parents. The issue is that the pathologist who performs the autopsy is not the one who delivers the information and gets the parents' consent: therefore, he does not know what they were told and what they actually agreed upon. MATERIALS AND METHODS: A questionnaire was sent to 3 groups of paediatricians (N=891) to approach their knowledge regarding autopsy. RESULTS: Among 362 paediatricians who answered the questionnaire, 57.2% never attended an autopsy and procedures were badly known. They did not know whether or not organs, were systematically sampled especially brain. Regarding the possibility of conservation of organs, a majority thought that one should not solely answer to parents'queries (63.8%) but rather that one should point out every possibility, without giving the ins and outs (60.8%). The majority favoured organs retention and use for research. CONCLUSION: We make 3 suggestions: to register autopsy in the Natioanal Securite Sociale nomenclature, to establish information and consent forms for organs'removal, retention and disposal, and to offer parents the possibility of an interview with the pathologist before and/or after the autopsy, in association with the paediatrician.

Autopsy↗

The effect of active parental consent on the ability to generalize the results of an alcohol, tobacco, and other drug prevention trial to rural adolescents.

The authors report the effect of active parental consent on sample bias among rural seventh graders participating in a drug abuse prevention trial. Students obtaining active consent from their parents to complete the survey were of higher academic standing, missed fewer days of school, and were less likely to participate in the special education program at their school as compared to students who did not return a parental consent form. However, students with consent were not significantly different from students whose parents actively declined. The sample obtained under active parental consent represents students less at risk for problem behaviors than would have been obtained under passive consent procedures.

Adolescent↗

Effect of informed parental consent on mothers' knowledge of newborn screening.

To determine whether knowledge was improved as a result of obtaining informed consent from parents for newborn screening of their infants for phenylketonuria (PKU) and other hereditary metabolic disorders, new mothers in seven Maryland hospitals were interviewed either before receiving a standard disclosure (n = 210) or after giving consent (n = 418). The mean knowledge score of the women interviewed after giving consent was significantly higher (P less than .001). Receiving the disclosure was a more powerful predictor of knowledge score, accounting for 40% of the variance, than demographic factors, which accounted for 9%. Women whose consent was obtained just prior to discharge tended to have lower knowledge scores than women whose consent was obtained earlier (P = .03). Women with higher knowledge scores were somewhat less likely to favor consent than women with lower scores. Although consent may not be appropriate for some low-risk procedures, informing parents can be easily and inexpensively accomplished.

Attitude↗

[Contraception and voluntary termination of pregnancy: legislative measures derogatory to parental consent in France].

Several derogatory clauses to parents' consent have been recently introduced in the French legislation concerning adolescents contraception and voluntary termination of pregnancy. Thus, from now on, adolescents may have free and anonymous access to contraception as well as detection and treatment of sexually transmitted diseases. Adolescents may also obtain emergency contraception without medical prescription. Parents' consent is no more necessary to authorize voluntary termination of pregnancy for an adolescent who wish to keep it secret.

Abortion, Induced↗

Parental consent for newborn screening in southern Taiwan.

OBJECTS: With the advent of genetic technologies, many genetic/metabolic disorders can be detected asymptomatically but might be untreatable, and the benefits and risks of screening for them are not fully known. The purpose of this study is to explore current practice with regard to the parental consent process in newborn screening (NBS). DESIGN: Staff in 23 obstetric clinics/hospitals that conduct NBS in one city of southern Taiwan were interviewed. Using content analysis, 15 interview transcripts, eight completed questionnaires, and other relevant documents from the 23 clinics/hospitals were analysed to reveal the framework of the parental consent process in NBS in southern Taiwan. MAIN MEASURES: Three categories-informed consent, informed dissent, and no informed/consent-were developed to analyse the parental consent process in NBS. RESULTS: The parental consent procedures in NBS and the quality of the information provided before obtaining consent vary widely. Because the traditional NBS was incorporated into routine paediatric practices in most clinics/hospitals, the most frequently encountered consent model is "informed dissent" (60.9%) and "no informed/consent" (30.4%); while an "informed consent" model (45.5%) is the frequent model for screening rare metabolic/genetic disorders. CONCLUSIONS: Specific guidelines to regulate the parental consent process for NBS are essential. Further studies should investigate parental responses to NBS, taking these as the basis on which to establish an informed consent model in Taiwan.

Adrenal Hyperplasia, Congenital↗

Informed parental consent for cochlear implantation of young deaf children: social and other considerations in the use of the 'bionic ear'.

This paper examines the social parameters surrounding the management of informed consent procedures for the parents of young deaf children for the surgical fitting of a cochlear implant ('bionic ear') to their child. Although most observers of this remarkable and well publicised medical development only see benefits in its use, the authors examine the nature of the conflict which has emerged between medical and media portrayals of the 'miracle' device and contrasting social, cultural and linguistic views of many Deaf people. The paper analyses the components of parental consent procedures for surgical implantation of their child, covering the risk-benefit analysis and, in particular, the information base that is provided for parents about the social construction of a 'Deaf life' by many Deaf people.

Child↗

Fertility and parental consent for minors to receive contraceptives.

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.

Abortion, Legal↗

A survey of parental consent process for newborn screening in Taiwan.

Recent technological developments in newborn screening (NBS) allow many genetic/metabolic disorders to be detected pre-symptomatically even though they may be untreatable. Thus, current NBS faces ethical, legal, and social challenges. Obtaining parental consent for NBS demonstrates respect for and educates parents. The purpose of this study was to explore current practices in obtaining parental consent to conduct NBS in Taiwan. A self-administered questionnaire was mailed to obstetric clinicslhospitals (N=339) and 204 questionnaires were returned for a response rate of 60.2%. Parental consent processes for NBS were divided into three categories-informed consent, informed refusal, and no informedlconsent. Between 66.7-67.6% clinics/hospitals used an "informed consent" model for all NBS items. Although most clinics/hospitals frequently informed parents before screening was conducted, the information given was often incomplete. Moreover, a "no informedl consent" model was used for congenital adrenal hyperplasia (CAH) and rare geneticlmetabolic disorders in between 22.5% and 25.1% of the clinics/hospitals, respectively. A total of 23.1% of clinics/hospitals chose an "informed refusal" model for the five traditional genetic/metabolic disorders. Using logistic regression analysis, the parental consent process for the five traditional disorders was found to have significant associations with the classification of the hospitals and the contracted NBS center (p < 0.01). Regional hospitals less frequently used the "informed consent" model than local clinics, and the clinics/hospitals that contracted with National Taiwan University Hospital were more likely to follow an "informed consent" model rather than those contracted with Taipei Institute Pathology. Establishing specific guidelines to regulate the parental consent process and educate medical personnel is crucial.

Adult↗

Written parental consent in school-based HIV/AIDS prevention research.

OBJECTIVES: We examined the process of obtaining "active," written parental consent for a school-based HIV/AIDS prevention project in a South African high school by investigating (1) parental consent form return rates, (2) parents' recall and knowledge of the research, and (3) the extent to which this consent procedure represented parents' wishes about their child's involvement in the research. METHODS: This cross-sectional descriptive study comprised interviews with parents of children in grades eight and nine in a poor, periurban settlement in Cape Town. RESULTS: Within 2 weeks, 94% of 258 parents responded to a letter requesting written consent and of those, 93% consented, but subsequent interviews showed that 65% remembered seeing the consent form. At the end of the interview, 99% consented to their child's participation. CONCLUSIONS: These findings challenge many of the assumptions underlying active written parental consent. However, they should not be used to deny adolescents at high risk of HIV infection the opportunity to participate in prevention trials. Rather, researchers together with the communities in which the research is undertaken need to decide on appropriate informed consent strategies.

Adolescent↗

Factors influencing middle and high schools' active parental consent return rates.

The authors examined factors influencing the return rates for attempting to collect active parental consent forms from 21,123 students in the 7th through 10th grades in 41 middle and high schools. Overall return rates from middle schools were higher than from high schools. Schools that offered high levels of staff support for collecting consent forms had higher return rates. Procedures where the consent form was attached to a school form that parents had to complete and return to the school yielded the highest return rate. Implications for how researchers can obtain a high parent consent form return rate are discussed.

Adolescent↗