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      Self-determination, healthcare treatment and minors in Italian clinical practice: ethical, psychological, juridical and medical-legal profiles

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          Abstract

          Background and aim: The social role of the minor, as indeed that of the physician, has changed markedly. This transformation has given rise to new patterns and responsibilities in the management of healthcare procedures that involve minors. Discussion: According to international legislation, in the clinical setting, as in other areas of social life, minors have the right to be heard and to have their opinions taken into consideration as an increasingly determining factor, in accordance with their age and degree of maturity and discernment. The authors describe the right to information and the decision-making process when the patient is a minor and underline the role of the parties involved (physicians, parents, under-age patient, judge) in various circumstances. Specifically, the paper analyzes the ethical and legal issues relating to the entitlement to decisions concerning the medical treatment of children and assesses the importance that Italian law attaches to the will of minors in the healthcare choices that affect them. Conclusions: Healthcare workers are called upon to face new challenges in order to ensure that healthcare services are able to safeguard the interests of minors while, at the same time, respecting their will. How to evaluate children’s competence to consent and how to balance the autonomy of parents and minors are crucial questions which the law courts in the various countries are increasingly being asked to address. These issues require close collaboration among various figures (parents, doctors, psychologists, judges) and imply the ethical need to undergo continuous training. (www.actabiomedica.it)

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          Why is it hard to make progress in assessing children’s decision-making competence?

          Background For decades, the discussion on children’s competence to consent to medical issues has concentrated around normative concerns, with little progress in clinical practices. Decision-making competence is an important condition in the informed consent model. In pediatrics, clinicians need to strike a proper balance in order to both protect children’s interests when they are not fully able to do so themselves and to respect their autonomy when they are. Children’s competence to consent, however, is currently not assessed in a standardized way. Moreover, the correlation between competence to give informed consent and age in children has never been systematically investigated, nor do we know which factors exactly contribute to children’s competence. This article aims at identifying these gaps in knowledge and suggests options for dealing with the obstacles in empirical research in order to advance policies and practices regarding children’s medical decision-making competence. Discussion Understanding children’s competency is hampered by the law. Legislative regulations concerning competency are established on a strong presumption that persons older than a certain age are competent, whereas younger persons are not. Furthermore, a number of contextual factors are believed to be of influence on a child’s decision-making competence: the developmental stage of children, the influence of parents and peers, the quality of information provision, life experience, the type of medical decision, and so on. Ostensibly, these diverse and extensive barriers hinder any form of advancement in this conflicted area. Addressing these obstacles encourages the discussion on children’s competency, in which the most prominent question concerns the lack of a clear operationalization of children’s competence to consent. Empirical data are needed to substantiate the discussion. Summary The empirical approach offers an opportunity to give direction to the debate. Recommendations for future research include: studying a standardized assessment instrument covering all four relevant dimensions of competence (understanding, reasoning, appreciation, expressing a choice), including a study population of children covering the full age range of 7 to 18 years, improving information provision, and assessing relevant contextual data.
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            Informed consent instead of assent is appropriate in children from the age of twelve: Policy implications of new findings on children’s competence to consent to clinical research

            Background For many decades, the debate on children’s competence to give informed consent in medical settings concentrated on ethical and legal aspects, with little empirical underpinnings. Recently, data from empirical research became available to advance the discussion. It was shown that children’s competence to consent to clinical research could be accurately assessed by the modified MacArthur Competence Assessment Tool for Clinical Research. Age limits for children to be deemed competent to decide on research participation have been studied: generally children of 11.2 years and above were decision-making competent, while children of 9.6 years and younger were not. Age was pointed out to be the key determining factor in children’s competence. In this article we reflect on policy implications of these findings, considering legal, ethical, developmental and clinical perspectives. Discussion Although assessment of children’s competence has a normative character, ethics, law and clinical practice can benefit from research data. The findings may help to do justice to the capacities children possess and challenges they may face when deciding about treatment and research options. We discuss advantages and drawbacks of standardized competence assessment in children on a case-by-case basis compared to application of a fixed age limit, and conclude that a selective implementation of case-by-case competence assessment in specific populations is preferable. We recommend the implementation of age limits based on empirical evidence. Furthermore, we elaborate on a suitable model for informed consent involving children and parents that would do justice to developmental aspects of children and the specific characteristics of the parent-child dyad. Summary Previous research outcomes showed that children’s medical decision-making capacities could be operationalized into a standardized assessment instrument. Recommendations for policies include a dual consent procedure, including both child as well as parents, for children from the age of 12 until they reach majority. For children between 10 and 12 years of age, and in case of children older than 12 years in special research populations of mentally compromised patients, we suggest a case-by-case assessment of children’s competence to consent. Since such a dual consent procedure is fundamentally different from a procedure of parental permission and child assent, and would imply a considerable shift regarding some current legislations, practical implications are elaborated.
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              Neuroethics: a modern context for ethics in neuroscience.

              Neuroethics, a recently modernized field at the intersection of bioethics and neuroscience, is founded on centuries of discussion of the ethical issues associated with mind and behavior. Broadly defined, neuroethics is concerned with ethical, legal and social policy implications of neuroscience, and with aspects of neuroscience research itself. Advances in neuroscience increasingly challenge long-held views of the self and the individual's relationship to society. Neuroscience also has led to innovations in clinical medicine that have not only therapeutic but also non-therapeutic dimensions that extend well beyond previously charted boundaries. The exponential increase in cross-disciplinary research, the commercialization of cognitive neuroscience, the impetus for training in ethics, and the increased attention being paid to public understanding of science all illuminate the important role of neuroethics in neuroscience.
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                Author and article information

                Journal
                Acta Biomed
                Acta Biomed
                Acta bio-medica : Atenei Parmensis
                Mattioli 1885 (Italy )
                0392-4203
                2018
                : 89
                : 1
                : 34-40
                Affiliations
                [1 ] Department of Health Science (DISSAL), University of Genova, Genova, Italy;
                [2 ] Department of Integrated Surgical and Diagnostic Science (DISC), University of Genova, Genova, Italy
                Author notes
                Correspondence: Ilaria Baldelli, M.D. Ph.D, Department of Integrated Surgical and Diagnostic Sciences (DISC) - University of Genoa Largo Rosanna Benzi 10 – Pad 15 - 16132 Genoa, Italy Tel. +39 0105558827 Fax +39 0105556351 E-mail: ilaria.baldelli@ 123456unige.it
                Article
                ACTA-89-34
                10.23750/abm.v89i1.6368
                6357619
                29633740
                c68f8928-2678-4859-b75c-49369385c698
                Copyright: © 2018 ACTA BIO MEDICA SOCIETY OF MEDICINE AND NATURAL SCIENCES OF PARMA

                This work is licensed under a Creative Commons Attribution 4.0 International License

                History
                : 13 April 2017
                : 20 September 2017
                Categories
                Original Article

                healthcare,minor,child,adolescent,autonomy,capacity,competence,pediatrics,surrogacy decision making

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