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(searched for: doi:10.1007/s10730-005-4951-7)
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Kevin W Coughlin
Paediatrics & Child Health, Volume 23, pp 138-146; https://doi.org/10.1093/pch/pxx127

Abstract:
Medical decision-making in the paediatric population is complicated by the wide variation in physical and psychological development that occurs as children progress from infancy to adolescence. Parents and legal guardians are the de facto decision-makers in early infancy, but thereafter, the roles of parents/legal guardians and paediatric patients become ever more complex. Health care providers (HCPs), while not decision-makers per se, have a significant role in medical decision-making throughout childhood. This statement outlines the ethical principles of medical decision-making for HCPs involved in caring for paediatric patients. This revision focuses on individual decision-making in the context of the patient–provider relationship and provides increased guidance for dealing with disagreements.
Lahtiranta Janne, Hyrynsalmi Sami, Koskinen Jani
Published: 1 January 2017
The ORBIT Journal, Volume 1, pp 1-13; https://doi.org/10.29297/orbit.v1i1.22

Abstract:
In the information society of today, privacy is a premium service and user-related information a commodity. This development has gone unnoticed for many, but for some it contradicts with their common sense and perception of right and wrong. If we look into user agreements, and the effect Fair Information Practice Principles (FIPPs) seem to have, this development is particularly evident. One-on-one agreements such as End User License Agreements (EULAs) between the providers and users have become ubiquitous to most users who simply scroll through the agreement and click ‘I agree’ without actually understanding or caring what they have accepted. There are various reasons for this kind of behavior ranging from complete indifference, to inadequate internet and technology literacy, and even to peer pressure as certain applications have become a ‘must have’ amongst a group of users. This problem is particularly current as personal mobile devices have become important, for some even inseparable, part of our daily lives. These devices, such as smart phones and tablets, have also become user-centered aggregation points of information that contain personal, even sensitive information about us, and those around us. At the same time, the number of different applications that have practically unrestrained access to the Internet, is on the rise. When combined with ignorance and negligence, the risk of placing personal information into wrong hands is a very real one. In the following, we focus on this well-explored challenge from a novel perspective; informed consent, and argue that one way to address this problem is to develop solutions that not only promote personal choice and awareness, but are also context-dependent. In order to provide a practical insight into our primarily conceptual work, we use one of the most popular applications, the Pokémon GO by Niantic Inc., in highlighting some of the encountered privacy-related issues.
International Handbook on Adolescent Health and Development pp 359-372; https://doi.org/10.1007/978-3-319-40743-2_18

Abstract:
With the advancement of medicine and technology, healthcare professionals will be more and more often faced with critical situations requiring skills in the field of ethics. The assessment of any minor’s competence, as well as the respect for the rights of adolescents to participate in decisions affecting their health, is not a fixed process that is derived from the mere application of principles. Indeed, in each situation, the healthcare teams must establish a climate that enables a thorough exchange with the young person, which allows for a shared decision. This process is flexible, respectful, but time-consuming, and must take into account the developmental stage of the patient, as well as their social environment. The purpose of this chapter is to provide guidance to professionals on how to address all facets of situations that entail difficult choices. In this chapter, a step-by-step procedure guarantees the fair participation of the young patients in any decision affecting their health or the course of their disease. It is to be hoped that all schools providing training at the pre-service level as well as teaching institutions hosting primary care health professionals will improve the ethics content of their curriculum related to adolescent capacity for decision making in clinical situations.
Published: 10 February 2015
Journal of Genetic Counseling, Volume 24, pp 213-224; https://doi.org/10.1007/s10897-015-9823-y

Abstract:
Family cohesiveness provides a unique cultural influence in the observance and expression of autonomy in terms of Filipino patients’ decision making. With genetic counseling yet in its dawning practice in the Philippines, healthcare professionals (i.e., geneticists, practitioners) practicing genetic counseling and students in the pioneering genetic counseling program face the challenge of how to provide culturally appropriate measures in respecting Filipinos’ autonomy. There is much deliberation with respect to identifying autonomous decision making among Filipino patients as counselees in genetic counseling. Cultural values influence how autonomy and bioethical principles are upheld. In a culturally-appropriate manner of identifying who makes health care and genetic counseling decisions, the sole focus on an individualistic perspective may be too western-based and may render genetic counseling less effective. The uniquely important cultural feature of family cohesiveness necessitates its incorporation into the practice of genetic counseling in the Philippines.
Published: 10 January 2014
BMC Medical Ethics, Volume 15, pp 2-2; https://doi.org/10.1186/1472-6939-15-2

Abstract:
Although informed consent is an integral part of clinical practice, its current doctrine remains mostly a matter of law and mainstream ethics rather than empirical research. There are scarce empirical data on patients’ perceived purpose of informed consent, which may include administrative routine/courtesy gesture, simple honest permission, informed permission, patient-clinician shared decision-making, and enabling patient’s self decision-making. Different purposes require different processes.
Published: 10 January 2014
BMC Medical Ethics, Volume 15, pp 3-3; https://doi.org/10.1186/1472-6939-15-3

Abstract:
The current doctrine of informed consent for clinical care has been developed in cultures characterized by low-context communication and monitoring-style coping. There are scarce empirical data on patients' norm perception of information disclosure in other cultures.
J. Steven Svoboda
Genital Cutting: Protecting Children from Medical, Cultural, and Religious Infringements pp 1-28; https://doi.org/10.1007/978-94-007-6407-1_1

Abstract:
The doctrine of informed consent functions reasonably within its area of applicability of competent adults, though even in that setting it suffers from some difficulties both theoretical and practical. When applied by proxy to incompetent persons such as mentally incapacitated adults and newborn babies, the doctrine becomes a legal fiction, i.e., a legal construct created to force-fit a set of facts into an established legal analysis that is not literally applicable. The conceptual, ethical and practical difficulties are maximized with proxy permission to authorize circumcision of neonates. “Proxy consent” for neonatal circumcision is a legal fiction that cloaks a usurpation of agency allowing ostensibly hallowed principles of autonomy and self-determination to be violated with impunity. Such legal fictions conceal our violations from ourselves and others under the pretenses of legal authorization and compliance with ethics and human rights, and—in the circumcision context—the further pretense of medical authorization, masking our failure to properly safeguard human dignity and autonomy.
, Philippe Rosset, , Rosaria Giordano, Carmen Bunu, , Yrjö T. Konttinen, Frank P. Luyten
Journal of Cellular and Molecular Medicine, Volume 15, pp 1266-1286; https://doi.org/10.1111/j.1582-4934.2011.01265.x

Abstract:
• Introduction • Characterization of cells for bone regeneration in human beings • State of the art in bone tissue engineering ‐ Biomaterials for scaffolding mesenchymal stem cells ‐ Future trends in bone tissue engineering • Clinical targets for cell therapy in orthopaedics ‐ Current clinical problems and therapeutic approaches ‐ Potential clinical applications of cell based therapies for bone repair ‐ Data reported in clinical studies • Selected paediatric bone disorders and cellular therapies ‐ Inborn errors of bone metabolism and cellular therapy ‐ Degenerative bone disorders in childhood • Ethical aspects of EU clinical trials ‐ Ethics related to information and consent ‐ Approval of the studies ‐ Ethics related to privacy/data protection ‐ Ethics related to the risk‐benefit assessment ‐ Ethics related to protection of the health of persons involved in clinical trials ‐ Ethics related to transparency regarding research results • Future directions and remarks Regenerative medicine seeks to repair or replace damaged tissues or organs, with the goal to fully restore structure and function without the formation of scar tissue. Cell based therapies are promising new therapeutic approaches in regenerative medicine. By using mesenchymal stem cells, good results have been reported for bone engineering in a number of clinical studies, most of them investigator initiated trials with limited scope with respect to controls and outcome. With the implementation of a new regulatory framework for advanced therapeutic medicinal products, the stage is set to improve both the characterization of the cells and combination products, and pave the way for improved controlled and well‐designed clinical trials. The incorporation of more personalized medicine approaches, including the use of biomarkers to identify the proper patients and the responders to treatment, will be contributing to progress in the field. Both translational and clinical research will move the boundaries in the field of regenerative medicine, and a coordinated effort will provide the clinical breakthroughs, particularly in the many applications of bone engineering.
, Kristina Berg-Kelly, Aidan Macfarlane, Lazare Benaroyo
Current Opinion in Pediatrics, Volume 22, pp 418-422; https://doi.org/10.1097/mop.0b013e32833b53ec

Abstract:
This update reviews the concepts underlying ethical issues in various contexts and countries, highlighting the evolution in the use of the core values underpinning the field and practice of bioethics as applied to healthcare.It stresses the specific position of the adolescent as being a unique individual searching for autonomy and, most of the time, being competent to make decisions regarding the adolescent's own health. It briefly outlines the principles of a 'deliberative' approach in which the practitioner, while keeping in mind the legal context of the country where the practitioner is working, assesses to what extent the adolescent can be considered as competent, and then discusses with the adolescent the medical and psychosocial aspects of the various actions to be taken in a situation, as well as the basic ethical values linked with each of the various options available. The deliberation can involve relevant stakeholders, provided the issues concerning confidentiality have been fully discussed with the adolescent.This process forces the practitioner, the adolescent patient and those who care for the adolescent patient to look outside their usual frameworks and make a decision that is in the best interest of the young person, and is informed by various ethical values.
, Loel Kim, Shu Li, Justin N. Baker, Michael Schmidt, Jonathan W. Camp, Raymond C. Barfield
Published: 12 February 2010
Qualitative Health Research, Volume 20, pp 628-643; https://doi.org/10.1177/1049732310361467

Abstract:
In this article we examine the discourse of four focus groups we conducted at a pediatric research hospital in which we queried teenage patients, parents, nurses, and physicians about their perceptions of the informed consent process in research. Autonomy, as the goal of informed consent, is a murky concept, with some ethicists questioning the possibility that it can ever be attained. We argue that it might be more productive to consider agency, which we define as language and action that are constructed, negotiated, and maintained through effective communication. Our goal was to understand how individuals rhetorically constructed agency in discussions of informed consent experiences. After transcribing and coding the focus group interviews, we identified six aspects of agency in participants’ discourse: (a) defining roles, (b) seeking information, (c) providing information, (d) supporting others, (e) making decisions, and (f) claiming agency for self. Examining these aspects of agency indicated that efforts to improve the informed consent process must address: (a) status differentials, (b) role definitions, (c) information flow, and (d) relationships.
Published: 9 February 2007
BMC Public Health, Volume 7, pp 20-20; https://doi.org/10.1186/1471-2458-7-20

Abstract:
The first vaccine to prevent human papillomavirus (HPV) and cervical cancer has been licensed, and in future, vaccination may be routinely offered to 10–14 year old girls. HPV is a sexually transmitted virus and some parents may refuse consent for vaccination. Under-16s in the UK have a right to confidential sexual health care without parental consent. We investigated parents' views on making available HPV vaccination to adolescent minors at sexual health clinics without parental consent. This was a semi-qualitative analysis of views of parents of 11–12 year old school children collected as part of a population-based survey of parental attitudes to HPV vaccination in Manchester. Parents were firstly asked if they agreed that a well-informed child should be able to request vaccination at a sexual health clinic without parental consent, and secondly, to provide a reason for this answer. Ethical perspectives on adolescent autonomy provided the framework for descriptive analysis. 307 parents answered the question, and of these, 244 (80%) explained their views. Parents with views consistent with support for adolescent autonomy (n = 99) wanted to encourage responsible behaviour, protect children from ill-informed or bigoted parents, and respected confidentiality and individual rights. In contrast, 97 parents insisted on being involved in decision-making. They emphasised adult responsibility for a child's health and guidance, erosion of parental rights, and respect for cultural and moral values. Other parents (n = 48) wanted clearer legal definitions governing parental rights and responsibilities or hoped for joint decision-making. Parents resistant to adolescent autonomy would be less likely to consent to future HPV vaccination, (67%) than parents supporting this principle (89%; p < 0.001). In the UK, the principle of adolescent autonomy is recognised and logically should include the right to HPV vaccination, but this may concern parents who would otherwise approve vaccination.
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