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Genetics in Medicine Open, ISSN:2949-7744

Objectives This document provides an English translation of the Israeli Joint Commission's national guidelines for triaging severely ill patients during the coronavirus disease 2019 (COVID-19) pandemic. Methods Four subcommittees of medical, legal, ethical-social, and religious experts developed the general principles and practical medical criteria for triaging scarce life-saving resources. Results The guidelines provide an overview of general principles as well as pragmatic medical criteria and a practical triage protocol to be followed should the healthcare system be overwhelmed due to COVID-19. Issues covered include triggers for activating the guidelines, guiding ethical, legal, and religious principles, equity in access, fair distribution, transparency, consistency, palliation, medical policy prioritization, problem-solving mechanisms, and public trust. Conclusions The Israeli consensus document and pragmatic medical triage protocol offer a societal and medical roadmap for allocating scarce resources during the COVID-19 pandemic or other disasters.

There have been ongoing debates as to how, or even whether, we should clinically classify gender diversity in children through clinical classification manuals. So-called 'depathologizing' is argued as being vital to address the stigma that these children are somehow disordered or sick. Yet one argument in favour of continued clinical classification for transgender and gender non-conforming children is that it better facilitates access to specialist psychological support. I argue that whilst continued clinical classification offers a seemingly pragmatic solution to ensuring access, it does in fact obscure our understanding of the individual needs of these children. In this paper I address fundamental issues that aim to better our understanding of need and thus why a child may benefit from specialist support. I do so by critiquing a paper I nearly wrote, which argued for the ongoing continued classification of gender incongruence in children. Ultimately, I argue that specialist psychological support and care should be driven by the needs of the individual child, as determined by the child and those involved with their care. By bettering our understanding as to why specialist psychological support may be beneficial for some, we move past the focus of such specialist support being provided because of the child's gender diversity. Methodologically the paper may be unusual, in comparison to traditional normative counter-argumentative bioethical position papers, but by presenting an argument for depathologization of gender diversity of children in this way there is also an alternative insight into the methods of bioethics.

Although scholars in bioethics usually consider the exclusion of migrants from basic healthcare as unjust, it remains unclear how health professionals should ethically deal with policies restricting access to healthcare for undocumented migrants. Debates on offering less than the most beneficial healthcare have been limited to contributions on ethical bedside rationing. This article draws on semi-structured in-depth interviews that explore health professional’s acceptance, as well as their willingness to resort to the use of deception to secure third-party payer approval for undocumented migrants. The results show that health professionals (1) are sceptical about both the possibility and desirability of verifying whether a patient’s declarations are deceitful in the setting of a consultation, but (2) are reluctant to use deception themselves to circumvent government policies restricting access to healthcare for undocumented migrants. We discuss how this approach of ‘relative impartiality’ threatens professional autonomy and conclude that professional associations should play a much more important role in supporting health professionals in relation to healthcare institutions and governments when their members are confronted with specific rationing practices forcing them to provide suboptimal healthcare.

The 2014 outbreak of Ebola virus disease (EVD) in West Africa has presented a significant public health crisis to the international health community and challenged U.S. emergency departments (EDs) to prepare for patients with a disease of exceeding rarity in developed nations. With the presentation of patients with Ebola to U.S. acute care facilities, ethical questions have been raised in both the press and medical literature as to how U.S. EDs, emergency physicians (EPs), emergency nurses, and other stakeholders in the health care system should approach the current epidemic and its potential for spread in the domestic environment. To address these concerns, the American College of Emergency Physicians, the Emergency Nurses Association, and the Society for Academic Emergency Medicine developed this joint position paper to provide guidance to U.S. EPs, emergency nurses, and other stakeholders in the health care system on how to approach the ethical dilemmas posed by the outbreak of EVD. This paper will address areas of immediate and potential ethical concern to U.S. EDs in how they approach preparation for and management of potential patients with EVD.

That AI will have a major impact on society is no longer in question. Current debate turns instead on how far this impact will be positive or negative, for whom, in which ways, in which places, and on what timescale. In order to frame these questions in a more substantive way, in this prolegomena we introduce what we consider the four core opportunities for society offered by the use of AI, four associated risks which could emerge from its overuse or misuse, and the opportunity costs associated with its under use. We then offer a high-level view of the emerging advantages for organisations of taking an ethical approach to developing and deploying AI. Finally, we introduce a set of five principles which should guide the development and deployment of AI technologies. The development of laws, policies and best practices for seizing the opportunities and minimizing the risks posed by AI technologies would benefit from building on ethical frameworks such as the one offered here.

This paper concerns the responsibility of co-authors in cases of scientific misconduct. Arguments in research integrity guidelines and in the bioethics literature concerning authorship responsibilities are discussed. It is argued that it is unreasonable to claim that for every case where a research paper is found to be fraudulent, each author is morally responsible for all aspects of that paper, or that one particular author has such a responsibility. It is further argued that it is more constructive to specify what task responsibilities come with different roles in a project and describe what kinds of situations or events call for some kind of action, and what the appropriate actions might be.

In their letter to the Editor in this issue, Kolstoe and Carpenter challenge a core aspect of our recently published case study of research approvals [BMC Medical Ethics 20:7] by arguing that we conflate research ethics with governance and funding processes. Amongst the key concerns of the authors are: 1) that our paper exemplifies a typical conflation of concepts such as governance, integrity and ethics, with significant consequences for claims around the responsibility and accountability of the organisations involved; 2) that, as a consequence of this conflation, we misrepresent the ethics review process, including in fundamental aspects such as the ethics approval-opinion distinction; 3) that it is difficult to see scope for greater integration of processes such as applying for funding, research approvals, Patient and Public Involvement, etc., as suggested by us. Here we present an alternative point of view towards the concerns raised.

Rapid advances in microarray and sequencing technologies are making genotyping and genome sequencing more affordable and readily available. There is an expectation that genomic sequencing technologies improve personalized diagnosis and personalized drug therapy. Concurrently, provision of direct-to-consumer genetic testing by commercial providers has enabled individuals’ direct access to their genomic data. The expanded availability of genomic data is perceived as influencing the relationship between the various parties involved including healthcare professionals, researchers, patients, individuals, families, industry, and government. This results in a need to revisit their roles and responsibilities. In a 1-day agenda-setting meeting organized by the COST Action IS1303 “Citizen’s Health through public-private Initiatives: Public health, Market and Ethical perspectives,” participants discussed the main challenges associated with the expanded availability of genomic information, with a specific focus on public-private partnerships, and provided an outline from which to discuss in detail the identified challenges. This paper summarizes the points raised at this meeting in five main parts and highlights the key cross-cutting themes. In light of the increasing availability of genomic information, it is expected that this paper will provide timely direction for future research and policy making in this area. Funding Deborah Mascalzoni is supported under Grant Agreement number 305444. Álvaro Mendes is supported by the FCT—The Portuguese Foundation for Science and Technology under postdoctoral grant SFRH/BPD/88647/2012. Isabelle Budin-Ljøsne receives support from the National Research and Innovation Platform for Personalized Cancer Medicine funded by The Research Council of Norway (NFR BIOTEK2021/ES495029) and Biobank Norway funded by The Research Council of Norway—grant number 245464. Heidi Carmen Howard is partly supported by supported by the Swedish Foundation for Humanities and Social Science under grant M13-0260:1), the Biobanking and Molecular Resource Infrastructure of Sweden (BBMRI.se) and the BBMRI-ERIC. Brígida Riso is supported by the Portuguese Foundation for Science and Technology (FCT) under the PhD grant SFRH/BD/100779/2014. Heidi Beate Bentzen receives support from the project Legal Regulation of Information Processing relating to Personalized Cancer Medicine funded by The Research Council of Norway BIOTEK2021/238999.

Actualment, la mort encara és tractada com un tema que la societat el considera tabú. És per això, que no se’n tenen prou coneixements ni s’aborda de forma eficaç, tot vulnerant els principis bioètics i drets dels pacients. Malauradament, també presenten dificultats els professionals sanitaris, encara que són els que conviuen diàriament amb ella. No estan preparats, no presenten coneixements, actituds i habilitats, ja que manquen de preparació a les universitats i de programes d’educació emocional en el procés de final de vida a les mateixes institucions sanitàries. Els sanitaris, únicament, estan preparats pel manteniment de la vida a conseqüència del gran avanç tecnològic, i la mort és considerada com el fracàs de la medicina. OBJECTIUS: L’objectiu principal és aprofundir en el coneixement del procés de final de vida; com a específics es troben descriure la gran rellevància de les CP, definir el paper dels professionals d’infermeria davant del procés de final de vida, explorar el significat de dignitat i mort digna, indagar sobre els drets humans i els principis bioètics dels pacients, i analitzar la possible vulneració dels principis bioètics i drets dels pacients en el procés de final de vida. MATERIAL I MÈTODE: Es realitza una revisió bibliogràfica i una anàlisi de la literatura científica general i específica sobre el procés de final de vida, concretament sobre la vulnerabilitat dels principis bioètics i els drets humans. S’utilitzen i analitzen fonts amb un rang temporal de 10 anys. La recerca ha estat realitzada en bases de dades de ciències de la salut com SCIELO, PUBMED i MEDLINE, MHMEDICAL; i bases de dades d’altres disciplines, en aquest cas jurídica, com NOTÍCIAS JURÍDICAS. També s’han consultat pàgines web d’associacions científiques nacionals i internacionals, revistes, diaris i Google acadèmic. Per últim, s’ha utilitzat informació aportada de llibres que es troben a la Biblioteca de les Escoles Universitàries Gimbernat del Campus de Sant Cugat del Vallès. CONCLUSIONS: És necessari impartir formació bàsica sobre atenció pal·liativa als professionals sanitaris, ja que sovint acostuma a arribar massa tard i de forma inadequada. L’enfocament actual ha de passar de ser curatiu a pal·liatiu; és a dir, la finalitat no ha de ser remetre una malaltia, sinó aconseguir el màxim benestar possible. Així doncs, s’ha de basar en les CP, on es considera i es cuida a la persona de forma holística, en les seves quatre dimensions (física, psicològica, social i espiritual). Per així, col·laborar en el procés d’aconseguir una bona mort, acceptada i amb companyia; on es respectin les decisions i desitjos dels pacients, sense vulnerar els principis bioètics (autonomia, beneficència, no-maleficència, justícia) i els drets humans; i reconèixer la mort com un procés natural i digne de viure’s. Per últim, és important la realització d’un DVA o d’un PAC, ja que aquest ajudarà als professionals a conèixer els desitjos i necessitats dels pacients, així com les seves últimes voluntats, tot respectant el principi fonamental d’autonomia. PARAULES CLAUS: Mort, Procés de Final de Vida, Cures Pal·liatives, Patiment, Agonia, Professionals sanitaris, Bioètica, Principis Bioètics, Vulnerabilitat dels Principis Bioètics, Dignitat, Vida digna, Mort digna, Drets Humans, Drets dels pacients, Vulnerabilitat dels Drets dels pacients, Autonomia, Consentiment Informat, Pla Anticipat de Cures, Document de Voluntats Anticipades, Testament Vital, Decisions Clíniques Bàsiques, Rebuig del malalt, Obstinament terapèutic, Limitació de l’actuació, Futilitat, Sedació pal·liativa, Eutanàsia, Suïcidi assistit, Comitès d’Ètica Assistencial. Currently, the death is still treated as an issue that society considers taboo. For this reason, you don’t have enough knowledge or is addressed effectively, all in violation of the principles of bioethics and rights of patients. Unfortunately, they also present difficulties are health professionals, although those who live daily with her. They aran’t ready, son’t have knowledge, attitudes and skills, because they lack training in universities and emotional education programs in the process of the end of life in the same health institutions. The professionals, only, are ready for the maintenance of life as a result of great technological advancement, and death is considered to be the failure of the medicine. OBJECTIVES: The main objective is to deepen the knowledge of the process of the end of life; as they are specific to describe the great relevance of the CP, define the role of nursing professionals in front of end of life process, explore the meaning of dignity and dignified death, probe on human rights and the principles of bioethics patients, and analyze the possible violation of bioethical principles and the rights of patients in the end of life process. MATERIAL AND METHOD: A literature review and analysis of the scoentific literature on the general ans specific process of end of life, specifically about the vulnerability of bioethical principles and human rights. Are used and analyzed sources with a temporary rank of 10 years. The research has benn carried out in the Health Sciences databases such as SCIELO, PUBMED, MEDLINE, MHMEDICAL; nd databases of other disciplines, in this case legal, as NOTÍCIAS JURÍDICAS. It is also viewed web pages of national and international scientific associations, magazines, newspapers and Google Scholar. Finally, it has been used information provided by books that ara in library of the Gimbernat University School of Sant Cugat del Vallès. CONCLUSIONS: It is necessary to provide basic training on palliative care to health professionals, as they often tend to arrive too late and improperly. The current approach has to be healing in palliative; that is to say, the aim should not be to send a disease, but to get the highest possible welfare. Thus, it must be based on the CP, which is considered and will take care of the person of holistic form, in its four dimensions (physical, psychological, social and spiritual). So, to collaborate in the process of getting a good death, accepted and company; where will respect the decisions and wishes of patients, without infringing the bioethical principles (autonomy, charity, non-maleficència, Justice) and human rights; and acknowledge the death as a natural process and worthy of living's. Finally, it is important to the realization of a DVA or a PAC, since this will help professionals to understand the wants and needs of patients as well as their last wills, while respecting the fundamental principle of autonomy. KEY WORDS: Death, Process of End of Life, Palliative Care, Suffering, Agony, Healthcare Professionals, Bioethics, Bioethical Principles, Vulnerability of Bioethical Principles, Dignity, Decent Life, Dignified Death, Human Rights, Rights of patients, Vulnerability of Patients Rights, autonomy, informed consent, Anticipated Plan of care, Advanced care Document, Testament Vital, Basic Clinical Decisions, Rejection of Sick, Therapeutic Obstinament, Limitation of the performance, Futility, Palliative Sedation, Euthanasia, Assisted Suicide, Medical Ethics committees. Grau en Infermeria

INTRODUÇÃO: Apesar de ainda muito incipiente a aproximação entre fisioterapia e bioética no Brasil, tem sido crescente a preocupação com o seu desenvolvimento devido à variedade de conflitos éticos que podem envolver os fisioterapeutas. O objetivo deste artigo foi fazer um estudo sobre as temáticas e a fundamentação teórica dos artigos indexados que pretendiam discutir a interface entre fisioterapia e bioética. MATERIAIS E MÉTODOS: Trata-se de estudo de análise de conteúdo pelo método de Bardin em todos os artigos publicados em revistas indexadas, encontrados nas fontes BIREME e SciELO entre 2000 e 2011, utilizando os descritores: fisioterapia e bioética e seus derivados. RESULTADOS: Confirmou-se o nível primário do desenvolvimento da reflexão bioética em fisioterapia, mostrando deficiências conceituais, distanciamento das teorias mais modernas e dos modelos desenvolvidos no Brasil e falta de consideração dos contextos socioculturais e econômicos como elementos que influenciam a geração de conflitos. CONSIDERAÇÕES FINAIS: Apontou-se a necessidade de desenvolver projetos de capacitação em bioética para professores e pesquisadores da área de fisioterapia, com vistas ao desenvolvimento de conteúdos nos programas de graduação e pós-graduação. INTRODUCTION: Although still incipient rapprochement between Physical Therapy and Bioethics in Brazil has been growing concern about its development due to the variety of ethical conflicts that may involve physiotherapists. This paper was a study on the themes and the theoretical foundation of the articles indexed wishing to discuss the interface between Physical Therapy and Bioethics. MATERIALS AND METHODS: This study was conducted by content analysis method Bardin in all papers published in refereed journals, found in the sources BIREME and SciELO between 2000 and 2011 using the keywords: physiotherapy and bioethics and its derivatives. RESULTS: We confirmed the primary level of development of bioethical reflection in physical therapy, showing conceptual deficiencies, distance of more modern theories and models developed in Brazil and lack of consideration of sociocultural and economic factors as influencing the generation of conflict. FINAL THOUGHTS: It was pointed out the need to develop training projects in bioethics for teachers and researchers in the field of physical therapy in order to develop content in undergraduate programs and graduate.

The purpose of this study is to systematically review guidelines, position papers, and reports on living kidney donation by minors. We systematically searched the databases such as Medline, Embase, ISI Web of knowledge, Google scholar as well as the websites of various bioethics committees, transplant organizations and societies. Guidelines were included if they provided recommendations for or against living kidney donation by minors. Data were analyzed using qualitative content analysis. We included 39 documents in this study. Twenty seven of these endorse an absolute prohibition of living kidney donation by minors, because of concerns regarding the decision-making capacity of minors, the impartiality of parental authorization, the best interests of the minor, and the necessity of the donation. Twelve guidelines, however, would exceptionally allow living kidney donation by minors, provided that adequate safeguards are put in place, including an assessment of the minor's autonomy and maturity, authorization by an independent body, assuring that the anticipated psychosocial benefits outweigh the medical and psychosocial risks for the donor and the restriction to situations of last resort. A more adequate medical and psychosocial follow-up of living kidney donors may likely contribute to a more unified approach towards living kidney donation by minors.

The objective of this study is to review ethical and clinical guidelines and position papers concerning the presymptomatic and predictive genetic testing of minors. The databases Medline, Philosopher's Index, Biological Abstracts, Web of Science and Google Scholar were searched using keywords relating to the presymptomatic and predictive testing of children. We also searched the websites of the national bioethics committees indexed on the websites of World Health Organization (WHO) and the German Reference Centre for Ethics in the Life Sciences, the websites of the Human Genetics Societies of various nations indexed on the website of the International Federation of Human Genetics Societies and related links and the national medical associations indexed on the website of the World Medical Association. We retrieved 27 different papers dealing with guidelines or position papers that fulfilled our search criteria. They encompassed the period 1991-2005 and originated from 31 different organizations. The main justification for presymptomatic and predictive genetic testing was the direct benefit to the minor through either medical intervention or preventive measures. If there were no urgent medical reasons, all guidelines recommend postponing testing until the child could consent to testing as a competent adolescent or as an adult. Ambiguity existed for childhood-onset disorders for which preventive or therapeutic measures are not available and for the timing of testing for childhood-onset disorders. Although the guidelines covering presymptomatic and predictive genetic testing of minors agree strongly that medical benefit is the main justification for testing, a lack of consensus remains in the case of childhood-onset disorders for which preventive or therapeutic measures are not available. ispartof: Clinical Genetics vol:70 issue:5 pages:374-381 ispartof: location:Denmark status: published