RESUMO
BACKGROUND: According to international transgender care guidelines, an important prerequisite for puberty suppression (PS) is transgender adolescents' competence to give informed consent (IC). In society, there is doubt whether transgender adolescents are capable of this, which in some countries has even led to limited access to this intervention. Therefore, this study examined transgender adolescents' medical decision-making competence (MDC) to give IC for starting PS in a structured, replicable way. Additionally, potential associated variables on MDC, such as age, intelligence, sex, psychological functioning, were investigated. METHODS: A cross-sectional semistructured interview study with 74 transgender adolescents (aged 10-18 years; 16 birth-assigned boys, 58 birth-assigned girls) within two Dutch specialized gender-identity clinics was performed. To assess MDC, judgements based on the reference standard (clinical assessment) and the MacArthur Competence Assessment Tool for Treatment (MacCAT-T), a validated semistructured interview, were used. RESULTS: Of the transgender adolescents, 93.2% (reference standard judgements; 69 of 74) and 89.2% (MacCAT-T judgements; 66 of 74) were assessed competent to consent. Intermethod agreement was 87.8% (65 of 74). Interrater agreements of the reference standard and MacCAT-T-based judgements were 89.2% (198 of 222) and 86.5% (192 of 222), respectively. IQ and sex were both significantly related to MacCAT-T total score, whereas age, level of emotional and behavioral challenges, and diagnostic trajectories duration were not. CONCLUSIONS: By using the MacCAT-T and clinicians' assessments, 93.2% and 89.2%, respectively, of the transgender adolescents in this study were assessed competent to consent for starting PS.
Assuntos
Tomada de Decisão Clínica/métodos , Consentimento Informado por Menores/psicologia , Competência Mental/psicologia , Puberdade , Pessoas Transgênero/psicologia , Adolescente , Comportamento do Adolescente , Fatores Etários , Criança , Comportamento Infantil , Estudos Transversais , Feminino , Humanos , Consentimento Informado por Menores/estatística & dados numéricos , Inteligência , Julgamento , Masculino , Países Baixos , Padrões de Referência , Pessoas Transgênero/estatística & dados numéricosRESUMO
BACKGROUND: Consent forms for exome and/or genome sequencing, collectively called genome-wide sequencing (GWS), frequently contain detailed information on complex topics such as sequencing analysis and incidental findings. Considering recent endeavors by the health care community to simplify GWS consent forms, it is important to gain stakeholders' perspectives on the content, length, and use of consent forms. METHODS: Thematic analysis was conducted on data obtained from focus groups with two participant cohorts: parents who previously provided consent for trio-based GWS as part of the translational pediatric GWS CAUSES Study, and genetic health care providers (HCP) who provide pre-test counseling for GWS. RESULTS: Genetic HCP indicated that consent forms cannot replace pre-test counseling, and as such, a simplified consent form focusing on the implications of GWS would be beneficial to both patients and HCP. Although parents' primary concerns varied when considering GWS, they all highly valued information. Parents also indicated the need for community and support after the return of GWS results. Both participant cohorts recommended that consent forms be available online and include an appendix for supplementary information. CONCLUSION: It is important to include both parents and HCP in the design of GWS consent forms, and also, to help connect families who have a shared diagnosis after the post-test counseling session.
Assuntos
Atitude , Sequenciamento do Exoma/normas , Aconselhamento Genético/normas , Testes Genéticos/normas , Consentimento Informado por Menores/normas , Adulto , Feminino , Aconselhamento Genético/psicologia , Pessoal de Saúde/psicologia , Humanos , Consentimento Informado por Menores/psicologia , Masculino , Pessoa de Meia-Idade , Pais/psicologiaRESUMO
ABSTRACT Objective: To carry out a review of the literature on adolescents' participation in decision making for their own health. Data sources: Review in the Scientific Electronic Library Online (SciELO), Latin American and Caribbean Health Sciences Literature (LILACS) and PubMed databases. We consider scientific articles and books between 1966 and 2017. Keywords: adolescence, autonomy, bioethics and adolescence, autonomy, ethics, in variants in the English, Portuguese and Spanish languages. Inclusion criteria: scientific articles, books and theses on clinical decision making by the adolescent patient. Exclusion criteria: case reports and articles that did not address the issue. Among 1,590 abstracts, 78 were read in full and 32 were used in this manuscript. Data synthesis: The age at which the individual is able to make decisions is a matter of debate in the literature. The development of a cognitive and psychosocial system is a time-consuming process and the integration of psychological, neuropsychological and neurobiological research in adolescence is fundamental. The ability to mature reflection is not determined by chronological age; in theory, a mature child is able to consent or refuse treatment. Decision-making requires careful and reflective analysis of the main associated factors, and the approach of this problem must occur through the recognition of the maturity and autonomy that exists in the adolescents. To do so, it is necessary to "deliberate" with them. Conclusions: International guidelines recommend that adolescents participate in discussions about their illness, treatment and decision-making. However, there is no universally accepted consensus on how to assess the decision-making ability of these patients. Despite this, when possible, the adolescent should be included in a serious, honest, respectful and sincere process of deliberation.
RESUMO Objetivo: Realizar uma revisão da literatura sobre a participação do adolescente na tomada de decisão sobre a sua saúde. Fonte de dados: Revisão nos bancos Scientific Electronic Library Online (SciELO), Literatura Latino-Americana e do Caribe em Ciências da Saúde (LILACS) e PubMed. Consideramos artigos científicos e livros entre 1966 e 2017. Palavras-chave: adolescência, autonomia, bioética e adolescência, autonomia, ética, em línguas inglesa, portuguesa e espanhola. Critérios de inclusão: artigos científicos, livros e dissertações que contemplassem a tomada de decisão clínica pelo paciente adolescente. Critérios de exclusão: relatos de caso e artigos que não abordavam a questão norteada nesta pesquisa. Do total de 1.590 resumos, 78 foram lidos na íntegra, e 36, utilizados neste manuscrito. Síntese dos dados: A idade em que o indivíduo é capaz para tomar decisões é motivo de debate na literatura. O desenvolvimento de um sistema cognitivo e psicossocial é um processo demorado, e faz-se fundamental a integração da investigação psicológica, neuropsicológica e neurobiológica na adolescência. A capacidade de reflexão madura não é determinada pela idade cronológica; em teoria, um menor maduro seria capaz de consentir ou recusar um tratamento. A tomada de decisão exige análise cuidadosa e reflexiva dos principais fatores associados, e a abordagem desse problema deve ocorrer por meio do reconhecimento da maturidade e da autonomia que existe no adolescente. Para tanto, é necessário "deliberar" com ele. Conclusões: Diretrizes internacionais recomendam que os adolescentes participem de discussões sobre sua doença, tratamento e tomada de decisão, entretanto não há nenhum consenso universalmente aceito sobre como avaliar a capacidade de decisão desses pacientes. Apesar disso, quando possível, o adolescente deve ser incluído em um processo sério, honesto, respeitoso e sincero de deliberação.
Assuntos
Humanos , Adolescente , Participação do Paciente/métodos , Participação do Paciente/psicologia , Relações Profissional-Paciente/ética , Serviços de Saúde do Adolescente/ética , Desenvolvimento do Adolescente , Consentimento Informado por Menores/psicologia , Consentimento Informado por Menores/ética , Tomada de Decisão Clínica/métodos , Tomada de Decisão Clínica/ética , Autonomia PessoalRESUMO
Decision-making capacity in children and adolescents in healthcare requires thorough assessment: the minor's maturity, understanding of the decision, risk of the situation and contextual factors needs to be explored. The intention was to design and validate a test-the Maturtest-to assess the maturity of minors in decision-making processes in healthcare. A reasoning test on moral conflicts for adolescents was designed to infer the degree of maturity of minors applied to decision-making regarding their own health. The test was completed by a sample of 441 adolescents aged from twelve to sixteen, with a corresponding analysis of their psychometric skills to measure feasibility, viability, reliability, validity, and sensitivity to change. Psychometric test results showed viability, reliability, validity, and sensitivity to change. High correlation (correlation index = 0.74) between the test score and the reference method were notable. A high stability was obtained with an intraclass correlation coefficient (r = 0.77). The average response time of the test was twenty-three minutes. This test measures the moral maturity of adolescents. It is presented as an objective, useful, valid, reliable tool, easy to fill out, edit and apply in a healthcare context. It helps to assess the maturity of minors faced with a decision.
Assuntos
Tomada de Decisões , Consentimento Informado por Menores/psicologia , Menores de Idade/psicologia , Desenvolvimento Moral , Inquéritos e Questionários , Adolescente , Criança , Feminino , Humanos , Masculino , Psicometria/instrumentação , Reprodutibilidade dos TestesRESUMO
In priority sub-Saharan African countries, on the ground observations suggest that the success of voluntary medical male circumcision (VMMC) programs should not be based solely on numbers of males circumcised. We identify gaps in the consent process and poor psychosocial outcomes among a key target group: male adolescents. We assessed compliance with consent and assent requirements for VMMC in western Kenya among males aged 15-19 (N = 1939). We also examined differences in quality of life, depression, and anticipated HIV stigma between uncircumcised and circumcised adolescents. A substantial proportion reported receiving VMMC services as minors without parent/guardian consent. In addition, uncircumcised males were significantly more likely than their circumcised peers to have poor quality of life and symptoms of depression. Careful monitoring of male adolescents' well-being is needed in large-scale VMMC programs. There is also urgent need for research to identify effective strategies to address gaps in the delivery of VMMC services.
Assuntos
Circuncisão Masculina/psicologia , Depressão/psicologia , Infecções por HIV/prevenção & controle , Consentimento Informado por Menores/psicologia , Consentimento dos Pais , Angústia Psicológica , Qualidade de Vida/psicologia , Estigma Social , Adolescente , Feminino , Humanos , Consentimento Livre e Esclarecido , Quênia , Masculino , Adulto JovemRESUMO
INTRODUCTION: Limited information is available on the views of children taking medicines and participating in clinical trials. These views may contribute to a better understanding of what can be improved on in the development of medicines from their perspective. OBJECTIVE: To collect children's views on taking medicines and participating in clinical trials. MATERIALS AND METHODS: A question-based survey was conducted among children living in European Union countries between January and August 2015. RESULTS: Almost 900 children aged 10-17 years from Finland, Germany, Sweden, Spain and Hungary responded. Almost 40% had a chronic health condition. The most commonly used pharmaceutical forms were solid or liquid medicines for oral use and injectable medicines. Bad taste and pain during administration were reported as common problems. Of 785 respondents, 17% had been taking part in a clinical trial. Most respondents would potentially agree to take part in a clinical trial because the investigational medicine might improve their own health or that of other children. Concern that the investigational medicine might be harmful was the main reason to refuse participation, if asked to. Over half of the respondents were willing to learn more about clinical trials, preferably online. CONCLUSIONS: It is necessary to involve children in the development of age-appropriate pharmaceutical forms and in the design of clinical trials. Children and their carers should be provided with age-appropriate medical information in the most suitable channels. We have identified some common problems that children experience when taking medicines, and we conclude that children are interested in learning more and giving their opinions on clinical trials.
Assuntos
Doença Crônica/tratamento farmacológico , Drogas em Investigação/uso terapêutico , Consentimento Informado por Menores/psicologia , Participação do Paciente/psicologia , Sujeitos da Pesquisa/psicologia , Adolescente , Pesquisa Biomédica , Criança , Ensaios Clínicos como Assunto , Compreensão , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos , Feminino , Finlândia , Alemanha , Pesquisa sobre Serviços de Saúde , Humanos , Hungria , Consentimento Informado por Menores/estatística & dados numéricos , Masculino , Avaliação das Necessidades , Participação do Paciente/estatística & dados numéricos , Sujeitos da Pesquisa/educação , Espanha , SuéciaRESUMO
BACKGROUND: International research guidance has shifted towards an increasingly proactive inclusion of children and adolescents in health research in recognition of the need for more evidence-based treatment. Strong calls have been made for the active involvement of children and adolescents in developing research proposals and policies, including in decision-making about research participation. Much evidence and debate on this topic has focused on high-income settings, while the greatest health burdens and research gaps occur in low-middle income countries, highlighting the need to take account of voices from more diverse contexts. METHODS: Between January and March 2014, 56 community representatives and secondary school students were involved in eight group discussions to explore views on the acceptability of involving children and adolescents in research, and how these groups should be involved in decision-making about their own participation. Discussions were voice-recorded and transcriptions analyzed using Framework Analysis, combining deductive and inductive approaches. RESULTS: Across these discussions, the idea of involving children and adolescents in decision-making about research participation was strongly supported given similar levels of responsibility carried in everyday life; existing capacity that should be recognized; the opportunity for learning involved; varying levels of parental control; and generational shifts towards greater understanding of science for adolescents than their parents. Joint decision-making processes were supported for older children and adolescents, with parental control influenced by perceptions of the risks involved in participation. CONCLUSIONS: Moves towards more active involvement of children and adolescents in planning studies and in making decisions about their participation are supported by these findings from Kenya. Important emerging considerations include the need to take account of the nature of proposed studies and prevailing attitudes and understanding of research in identifying children's and adolescents' roles. More research is needed to expand diversity and develop approaches to joint assent and consent processes that would fairly represent children's and adolescents' wishes and interests, towards their long term benefit.
Assuntos
Atitude Frente a Saúde , Tomada de Decisões/ética , Seleção de Pacientes/ética , Adolescente , Adulto , Criança , Participação da Comunidade , Ética em Pesquisa , Feminino , Humanos , Consentimento Informado por Menores/ética , Consentimento Informado por Menores/psicologia , Quênia , Masculino , Pessoa de Meia-Idade , População Rural , Adulto JovemRESUMO
OBJECTIVE: To carry out a review of the literature on adolescents' participation in decision making for their own health. DATA SOURCES: Review in the Scientific Electronic Library Online (SciELO), Latin American and Caribbean Health Sciences Literature (LILACS) and PubMed databases. We consider scientific articles and books between 1966 and 2017. Keywords: adolescence, autonomy, bioethics and adolescence, autonomy, ethics, in variants in the English, Portuguese and Spanish languages. Inclusion criteria: scientific articles, books and theses on clinical decision making by the adolescent patient. Exclusion criteria: case reports and articles that did not address the issue. Among 1,590 abstracts, 78 were read in full and 32 were used in this manuscript. DATA SYNTHESIS: The age at which the individual is able to make decisions is a matter of debate in the literature. The development of a cognitive and psychosocial system is a time-consuming process and the integration of psychological, neuropsychological and neurobiological research in adolescence is fundamental. The ability to mature reflection is not determined by chronological age; in theory, a mature child is able to consent or refuse treatment. Decision-making requires careful and reflective analysis of the main associated factors, and the approach of this problem must occur through the recognition of the maturity and autonomy that exists in the adolescents. To do so, it is necessary to "deliberate" with them. CONCLUSIONS: International guidelines recommend that adolescents participate in discussions about their illness, treatment and decision-making. However, there is no universally accepted consensus on how to assess the decision-making ability of these patients. Despite this, when possible, the adolescent should be included in a serious, honest, respectful and sincere process of deliberation.
Assuntos
Desenvolvimento do Adolescente , Serviços de Saúde do Adolescente , Tomada de Decisão Clínica , Consentimento Informado por Menores , Participação do Paciente , Relações Profissional-Paciente , Adolescente , Serviços de Saúde do Adolescente/ética , Tomada de Decisão Clínica/ética , Tomada de Decisão Clínica/métodos , Humanos , Consentimento Informado por Menores/ética , Consentimento Informado por Menores/psicologia , Participação do Paciente/métodos , Participação do Paciente/psicologia , Autonomia Pessoal , Relações Profissional-Paciente/éticaRESUMO
We present the case of a girl aged 17 years and 10 months who has a strong family history of long QT syndrome and genetic testing confirming the diagnosis of long QT syndrome in the patient also. She was initially medically treated with ß-blocker therapy; however, after suffering 1 episode of syncope during exertion, she underwent placement of an implantable cardioverter defibrillator. Since then, she has never had syncope. However, during the few months before this presentation, she experienced shocks on multiple occasions without any underlying arrhythmias. These shocks are disconcerting for her, and she is having significant anxiety about them. She requests the defibrillator to be inactivated. However, her mother, who also shares the diagnosis of long QT syndrome, disagrees and wants the defibrillator to remain active. The ethics team is consulted in this setting of disagreement between an adolescent, who is 2 months shy of the age of maturity and medical decision-making, and her mother, who is currently responsible for her medical decisions. The question for the consultation is whether it would be ethically permissible for the doctors to comply with the patient's request to turn off the defibrillator or whether the doctors should follow the mother's wishes until the patient is 18 years of age.
Assuntos
Desfibriladores Implantáveis/ética , Consentimento Informado por Menores/ética , Síndrome do QT Longo/terapia , Consentimento dos Pais/ética , Participação do Paciente , Adolescente , Fatores Etários , Desfibriladores Implantáveis/efeitos adversos , Desfibriladores Implantáveis/psicologia , Feminino , Humanos , Consentimento Informado por Menores/psicologia , Síndrome do QT Longo/diagnóstico , Síndrome do QT Longo/psicologia , Relações Mãe-Filho/psicologia , Consentimento dos Pais/psicologia , Participação do Paciente/psicologia , Relações Médico-Paciente/ética , Relações Profissional-Família/éticaRESUMO
Participation and Information in Child and Youth Psychiatry Participation is part of children's legal rights - even in psychiatric treatment. However, former studies show that most children have barely been informed about their treatment and that their opinion has not been taken into account in any decision making process. Nowadays there is an increased awareness about involving children in the decision making process and in informing them about treatment. This subject has also gathered more importance through legal actions changed in favor of the children. We have investigated to what extend children in in-patient treatment in the child and adolescent psychiatry feel informed about and included in decisions concerning their treatment. N = 114 children of the age between 12-18 years have been asked via a written survey. Results show that more than half of the young people feel that they do have the possibility to take part in decision-making. Only a third of the participants felt sufficiently informed before and during their hospital stay.
Assuntos
Psiquiatria do Adolescente , Psiquiatria Infantil , Tomada de Decisões , Participação do Paciente/psicologia , Adolescente , Criança , Humanos , Consentimento Informado por Menores/ética , Consentimento Informado por Menores/psicologia , Consentimento Informado por Menores/estatística & dados numéricos , Tempo de Internação , Participação do Paciente/estatística & dados numéricos , Inquéritos e QuestionáriosRESUMO
Background: The consent process used in clinical research today falls markedly short of the ideal process envisioned nearly 30 years ago. Critics have suggested that the informed consent process has become challenging, formalistic, and incompletely understood by researchers and participants alike. Hence, the purpose of this pilot study was to identify and characterize important aspects of the informed consent process that teens believe impact their understanding of risks of participation in studies with genetic testing. Methods: The personal research experiences of 15 teens regarding consent/assent and research participation in studies with genetic testing were solicited through focus-group interviews. All participants had enrolled in at least one research study involving genetic testing in the prior 2 years. All groups were facilitated by the same experienced focus-group moderator. Themes and subthemes were identified, summarized, and interpreted using conventional qualitative content analysis. Results: Three overarching themes emerged from the interviews: fear of what could happen, need for additional information regarding risks, and need for autonomy and decision-making control throughout the consent process. Conclusion: Results of this pilot study provide preliminary evidence that teens can identify and characterize key issues in the informed consent/assent process when it comes to the risks of research participation. These findings are consistent with other research regarding teens' perceptions and recommendations for genetic testing research.
Assuntos
Testes Genéticos , Consentimento Informado por Menores , Adolescente , Pesquisa Biomédica/ética , Compreensão , Medo/psicologia , Feminino , Grupos Focais , Testes Genéticos/ética , Humanos , Consentimento Informado por Menores/ética , Consentimento Informado por Menores/psicologia , Entrevistas como Assunto , Masculino , Projetos Piloto , Medição de RiscoRESUMO
In 2014, the Belgian Euthanasia Law was amended so as to extend the possibility of obtaining euthanasia to minors who have the capacity for discernment. The amendment led to considerable debate among Belgian legal experts, health care professionals and ethicists, in large part due to concerns about the scope and assessment of the minor's 'capacity for discernment', a concept first introduced in Belgian medical law by the amendment. This article offers a critical legal analysis of the concept of 'capacity for discernment' and its implications for euthanasia practice in Belgium. We do so by focusing on a ruling of the Belgian Constitutional Court of 29 October 2015, where the concept figured prominently in the examination of the constitutionality of the amendment. This approach also allows us to shed light on the interpretation of several core aspects of the original 2002 Euthanasia Law and its 2014 amendment.
Assuntos
Eutanásia/legislação & jurisprudência , Eutanásia/psicologia , Consentimento Informado por Menores/legislação & jurisprudência , Consentimento Informado por Menores/psicologia , Competência Mental/legislação & jurisprudência , Direito a Morrer , Adolescente , Bélgica , Criança , Humanos , JurisprudênciaRESUMO
BACKGROUND: Children's intentions should be respected. Parents are the key persons involved in decision-making related to their children. In Japan, the appropriate ages and standards for a child's consent and assent, approval, and decision-making are not clearly defined, which makes the process of obtaining consent and assent for clinical research complex. The purpose of this paper is as follows: to understand the attitudes and motives of parents concerning children's participation in medical research and the factors influencing their decision-making. We also sought to clarify who has the right to be involved in decisions regarding children's participation in research. METHODS: A semi-structured Internet survey on parents' opinions and attitudes and preferences concerning medical research involvement was conducted. Children were divided into three age groups (6-10-year-olds, 11-14-year-olds, and 15-18-year-olds), with three illness severity categories. Possible correlations between the number of children, children's ages, parents' educational levels, and parents' attitudes were examined. RESULTS: Among the participants, 42.3% recognized the term "informed consent." The proportion of participants who understood "informed consent" increased with educational level. Four out of five participants did not know, or had not heard of, the term "informed assent." Furthermore, the percentage of those who understood the term "informed assent" increased with academic level. Participants generally believed in prioritizing parents' opinions over children's, and that parents and children would ideally reach a joint decision. Although many parents favored collaborative decision-making, they also wanted their own will reflected in the decision and felt they should receive important information before their children do. Decision-making was affected by the condition's severity and prognosis. This indicates that most Japanese parents believe that their children have the right to know their disease name and treatment; nonetheless, they should be protected. Parents' values and judgments regarding medical intervention involving their children varied. CONCLUSIONS: Children's ability to consent to treatment and research believed to be in their best interests should be assessed appropriately. They should be permitted to provide consent or assent, and their views should be respected. Involving children in decision-making fosters more open communication and transparency between medical professionals, parents, and children.
Assuntos
Pesquisa Biomédica/ética , Pais/psicologia , Adolescente , Adulto , Fatores Etários , Atitude Frente a Saúde , Criança , Tomada de Decisões/ética , Escolaridade , Feminino , Humanos , Consentimento Livre e Esclarecido/ética , Consentimento Livre e Esclarecido/psicologia , Consentimento Informado por Menores/ética , Consentimento Informado por Menores/psicologia , Japão , Masculino , Pessoa de Meia-Idade , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Participation in research is associated with benefits and burdens for individual research participants. Children living with a chronic illness are considered particularly vulnerable as they are already burdened with symptoms of their illness. In particular contexts, such as learning health care systems (LHS), where research and clinical care are integrated, children with chronic illnesses may be asked to participate in research related to their illness. A growing body of literature has focused on children's perspectives as research subjects; however, a relatively understudied aspect concerns children's experiences of research in clinics where they are also patients. METHODS: We interviewed 25 Canadian children and adolescents living with inflammatory bowel disease (IBD) about their experiences of research participation. RESULTS: Our participants described aspects of the research process and particular experiences as benefits and others as burdens. Benefits included helping others, receiving incentives, receiving the results of previous studies, and participating in fun activities. Burdens included the time required for particular types of research, physical and psychological discomfort, and feelings of obligation. CONCLUSIONS: Our study describes the experiences of children participating in research at a site that integrates research and clinical care. Our participants described experiences that often go unreported (such as feelings of obligation); we mention these as important considerations to be mindful of when interacting with children as (potential) research participants in an LHS and when thinking about research ethics protocols or the assent/consent process.
Assuntos
Atitude , Saúde da Criança , Emoções , Motivação , Participação do Paciente/psicologia , Sujeitos da Pesquisa , Adolescente , Canadá , Criança , Doença Crônica , Atenção à Saúde , Ética em Pesquisa , Feminino , Humanos , Doenças Inflamatórias Intestinais , Consentimento Informado por Menores/psicologia , Aprendizagem , Masculino , Pesquisa QualitativaRESUMO
BACKGROUND: Various international laws and guidelines stress the importance of respecting the developing autonomy of children and involving minors in decision-making regarding treatment and research participation. However, no universal agreement exists as to at what age minors should be deemed decision-making competent. Minors of the same age may show different levels of maturity. In addition, patients deemed rational conversation-partners as a child can suddenly become noncompliant as an adolescent. Age, context and development all play a role in decision-making competence. In this article we adopt a perspective on competence that specifically focuses on the impact of brain development on the child's decision-making process. MAIN BODY: We believe that the discussion on decision-making competence of minors can greatly benefit from a multidisciplinary approach. We adopted such an approach in order to contribute to the understanding on how to deal with children in decision-making situations. Evidence emerging from neuroscience research concerning the developing brain structures in minors is combined with insights from various other fields, such as psychology, decision-making science and ethics. Four capacities have been described that are required for (medical) decision-making: (1) communicating a choice; (2) understanding; (3) reasoning; and (4) appreciation. Each capacity is related to a number of specific skills and abilities that need to be sufficiently developed to support the capacity. Based on this approach it can be concluded that at the age of 12 children can have the capacity to be decision-making competent. However, this age coincides with the onset of adolescence. Early development of the brain's reward system combined with late development of the control system diminishes decision-making competence in adolescents in specific contexts. We conclude that even adolescents possessing capacities required for decision-making, may need support of facilitating environmental factors. CONCLUSION: This paper intends to offer insight in neuroscientific mechanisms underlying the medical decision-making capacities in minors and to stimulate practices for optimal involvement of minors. Developing minors become increasingly capable of decision-making, but the neurobiological development in adolescence affects competence in specific contexts. Adequate support should be offered in order to create a context in which minors can make competently make decisions.
Assuntos
Desenvolvimento do Adolescente , Desenvolvimento Infantil , Tomada de Decisões , Consentimento Informado por Menores/psicologia , Competência Mental , Adolescente , Fatores Etários , Encéfalo/crescimento & desenvolvimento , Criança , Humanos , Psicologia do Adolescente , Psicologia da CriançaRESUMO
The primary objective of this study was to examine the associations of children's involvement in decisions about research participation with their perceptions of the decision-making process and self-efficacy. Participants were children (ages 8-17) who enrolled in research studies in the prior 2 months. Children completed a questionnaire that yielded three decision-making involvement subscales: Researcher Engages Child, Researcher Supports Autonomy, and Child Participates. Children reported on fairness of the decision-making process and health-related decision self-efficacy. After adjusting for age, higher scores on Researcher Engages Child were associated with greater self-efficacy, and higher scores on Researcher Supports Autonomy were associated with greater perceived fairness. These data underscore the potential importance of researcher-child interactions about research participation when assent is sought, including proactively involving children in the decision by asking for their opinions and communicating their central role in the decision, which are likely to be more meaningful to children than receiving information or signing a form.
Assuntos
Atitude , Pesquisa Biomédica/ética , Tomada de Decisões , Consentimento Informado por Menores/ética , Participação do Paciente , Autoeficácia , Justiça Social , Adolescente , Criança , Comunicação , Feminino , Humanos , Consentimento Informado por Menores/psicologia , Masculino , Participação do Paciente/psicologia , Percepção , Autonomia Pessoal , Relações Profissional-Paciente , Pesquisadores , Justiça Social/psicologia , Inquéritos e QuestionáriosRESUMO
Parents' preferences for unsolicited findings (UFs) from diagnostic whole-exome sequencing (WES) for their children remain largely unexplored. Our aim was to gain insight into parental considerations favoring acceptance/decline of UFs pertaining to their child. We conducted 20 qualitative, semistructured interviews with parents (n=34) of children with a developmental delay, aged <1 to 17 years, after consenting to WES, but before feedback of results. Key findings from our study were that all parents favored acceptance of UFs for medically actionable conditions in childhood, but that preferences and considerations diverged for UFs with no medical actionability, or only in adulthood, and regarding carrier-status. Sometimes non-medical utility considerations (considerations of usefulness of knowing UFs, not rooted in (preventive) medical treatment or controls) were given in favor of disclosure of UFs. Sometimes the child's future autonomy formed a reason to withhold UFs at present, despite an unfavorable prognosis concerning the child's cognitive capabilities. Some parents only preferred receiving UFs if these findings were directly related to their reasons for seeking a diagnosis. These findings are essential for developing morally responsible policy and for counseling. Further research should focus on whether considerations of non-medical utility alone can justify disclosure of UFs and whether reasons for seeking a diagnosis place further constraints on what UFs may be returned/withheld. How parents can be aided in contemplating different scenarios regarding their child's future development also deserves further inquiry.
Assuntos
Exoma , Aconselhamento Genético/ética , Testes Genéticos/ética , Consentimento Informado por Menores/ética , Pais/psicologia , Análise de Sequência de DNA/ética , Humanos , Consentimento Informado por Menores/psicologia , Consentimento Informado por Menores/normas , Menores de Idade/psicologia , Revelação da VerdadeRESUMO
More and more children, and even more so adolescents, undergo procedures pertaining to the category of aesthetic surgery and mainly aiming to improve the patient's physical appearance. There is a broad spectrum of possible operations ranging from purely cosmetic procedures to operations with a medical indication.
Assuntos
Menores de Idade/legislação & jurisprudência , Procedimentos de Cirurgia Plástica/ética , Procedimentos de Cirurgia Plástica/legislação & jurisprudência , Adolescente , Pré-Escolar , Orelha Externa/anormalidades , Orelha Externa/cirurgia , Ética Médica , Alemanha , Humanos , Consentimento Informado por Menores/legislação & jurisprudência , Consentimento Informado por Menores/psicologia , Cobertura do Seguro/legislação & jurisprudência , Menores de Idade/psicologia , Programas Nacionais de Saúde/legislação & jurisprudência , Consentimento dos Pais/legislação & jurisprudência , Consentimento dos Pais/psicologia , Autonomia Pessoal , Procedimentos de Cirurgia Plástica/psicologiaRESUMO
In 1995, the American Society of Human Genetics (ASHG) and American College of Medical Genetics and Genomics (ACMG) jointly published a statement on genetic testing in children and adolescents. In the past 20 years, much has changed in the field of genetics, including the development of powerful new technologies, new data from genetic research on children and adolescents, and substantial clinical experience. This statement represents current opinion by the ASHG on the ethical, legal, and social issues concerning genetic testing in children. These recommendations are relevant to families, clinicians, and investigators. After a brief review of the 1995 statement and major changes in genetic technologies in recent years, this statement offers points to consider on a broad range of test technologies and their applications in clinical medicine and research. Recommendations are also made for record and communication issues in this domain and for professional education.
Assuntos
Testes Genéticos/ética , Testes Genéticos/legislação & jurisprudência , Testes Genéticos/tendências , Genética/história , Genômica/métodos , Consentimento Informado por Menores/psicologia , Adolescente , Criança , Triagem de Portadores Genéticos , Genômica/ética , História do Século XX , História do Século XXI , Humanos , Recém-Nascido , Análise em Microsséries/métodos , Análise em Microsséries/tendências , Farmacogenética/métodosRESUMO
Knowledge on children's capacities to consent to medical treatment is limited. Also, age limits for asking children's consent vary considerably between countries. Decision-making on predictive genetic testing (PGT) is especially complicated, considering the ongoing ethical debate. In order to examine just age limits for alleged competence to consent in children, we evaluated feasibility of a standardized assessment tool, and investigated cutoff ages for children's competence to consent to PGT. We performed a pilot study, including 17 pediatric outpatients between 6 and 18 years at risk for an autosomal dominantly inherited cardiac disease, eligible for predictive genetic testing. The reference standard for competence was established by experts trained in the relevant criteria for competent decision-making. The MacArthur Competence Assessment Tool for Treatment (MacCAT-T) served as index test. Data analysis included raw agreement between competence classifications, difference in mean ages between children judged competent and judged incompetent, and estimation of cutoff ages for judgments of competence. Twelve (71 %) children were considered competent by the reference standard, and 16 (94 %) by the MacCAT-T, with an overall agreement of 76 %. The expert judgments disagreed in most cases, while the MacCAT-T judgments agreed in 65 %. Mean age of children judged incompetent was 9.3 years and of children judged competent 12.1 years (p = .035). With 90 % sensitivity, children younger than 10.0 years were judged incompetent, with 90 % specificity children older than 11.8 years were judged competent. Feasibility of the MacCAT-T in children is confirmed. Initial findings on age cutoffs are indicative for children between the age of 12 and 18 to be judged competent for involvement in the informed consent process. Future research on appropriate age-limits for children's alleged competence to consent is needed.