Consideraciones bioéticas en el manejo de la esclerosis lateral amiotrófica: Una aproximación al quehacer fonoaudiológico

Introducción: La esclerosis lateral amiotrófica (ELA) es la forma más común de enfermedad degenerativa de motoneurona en la edad adulta y es considerada una enfermedad terminal. Por lo mismo, el accionar del fonoaudiólogo debe considerar el respeto a los principios bioéticos básicos para garantizar una asistencia adecuada. Objetivo: Conocer aquellas consideraciones bioéticas relacionadas al manejo y estudio de personas con ELA para luego brindar una aproximación hacia el quehacer fonoaudiológico. Método: Se efectuó una búsqueda bibliográfica en las bases de datos PubMed, Scopus y SciELO. Se filtraron artículos publicados desde 2000 hasta junio de 2023 y fueron seleccionados aquellos que abordaban algún componente bioético en población con ELA. Resultados: Aspectos relacionados al uso del consentimiento informado y a la toma de decisiones compartidas destacaron como elementos esenciales para apoyar la autonomía de las personas. Conclusión: Una correcta comunicación y una toma de decisiones compartida son claves para respetar la autonomía de las personas. A su vez, la estandarización de procedimientos mediante la investigación clínica permitirá aportar al cumplimiento de los principios bioéticos de beneficencia y no maleficencia, indispensables para la práctica profesional.

Introduction: Amyotrophic lateral sclerosis (ALS) is the most common form of degenerative motor neuron disease in adulthood and is considered a terminal disease. For this reason, the actions of the speech therapist must consider respect for basic bioethical principles to guarantee adequate assistance. Objective: To know those bioethical considerations related to the management and study of people with ALS to then provide an approach to speech therapy. Methodology: A bibliographic search was carried out in the PubMed, Scopus, and SciELO databases. Articles published from 2000 to June 2023 were filtered and those that addressed a bioethical component in the population with ALS were selected. Results: Aspects related to the use of informed consent and shared decision-making stood out as essential elements to support people's autonomy. Conclusion: Proper communication and shared decision-making are key to respecting people's autonomy. In turn, the standardization of procedures through clinical research will contribute to compliance with the bioethical principles of beneficence and non-maleficence, essential for professional practice.

Ethical Incorporation of Artificial Intelligence into Neurosurgery: A Generative Pre-Trained Transformer Chatbot-Based, Human-Modified Approach.

INTRODUCTION: Artificial intelligence (AI) has become increasingly used in neurosurgery. Generative pre-trained transformers (GPTs) have been of particular interest. However, ethical concerns regarding the incorporation of AI into the field remain underexplored. We delineate key ethical considerations using a novel GPT-based, human-modified approach, synthesize the most common considerations, and present an ethical framework for the involvement of AI in neurosurgery. METHODS: GPT-4, ChatGPT, Bing Chat / Copilot, You, Perplexity.ai, and Google Bard were queried with the prompt "How can artificial intelligence be ethically incorporated into neurosurgery?". Then, a layered GPT-based thematic analysis was performed. The authors synthesized the results into considerations for the ethical incorporation of AI into neurosurgery. Separate Pareto analyses with 20% threshold and 10% threshold were conducted to determine salient themes. The authors refined these salient themes. RESULTS: Twelve key ethical considerations focusing on stakeholders, clinical implementation, and governance were identified. Refinement of the Pareto analysis of the top 20% most salient themes in the aggregated GPT outputs yielded ten key considerations. Additionally, from the top 10% most salient themes, five considerations were retrieved. An ethical framework for the use of AI in neurosurgery was developed. CONCLUSION: It is critical to address the ethical considerations associated with the use of AI in neurosurgery. The framework described in this manuscript may facilitate the integration of AI into neurosurgery, benefitting both patients and neurosurgeons alike. We urge neurosurgeons to use AI only for validated purposes and caution against automatic adoption of its outputs without neurosurgeon interpretation.

Australian public perspectives on genomic newborn screening: which conditions should be included?

BACKGROUND: Implementing genomic sequencing into newborn screening programs allows for significant expansion in the number and scope of conditions detected. We sought to explore public preferences and perspectives on which conditions to include in genomic newborn screening (gNBS). METHODS: We recruited English-speaking members of the Australian public over 18 years of age, using social media, and invited them to participate in online focus groups. RESULTS: Seventy-five members of the public aged 23-72 participated in one of fifteen focus groups. Participants agreed that if prioritisation of conditions was necessary, childhood-onset conditions were more important to include than later-onset conditions. Despite the purpose of the focus groups being to elicit public preferences, participants wanted to defer to others, such as health professionals or those with a lived experience of each condition, to make decisions about which conditions to include. Many participants saw benefit in including conditions with no available treatment. Participants agreed that gNBS should be fully publicly funded. CONCLUSION: How many and which conditions are included in a gNBS program will be a complex decision requiring detailed assessment of benefits and costs alongside public and professional engagement. Our study provides support for implementing gNBS for treatable childhood-onset conditions.

Vaccine Mandates: Weighing the Common Good vs Personal Conscience and Autonomy.

COVID-19 is a serious illness with significant morbidity and mortality. Vaccines to immunize against it were developed in record time. Mandates followed. The question to be considered is when mandates are ethical. Mandates can be used to prevent spread of an infection, prevent overwhelming the healthcare system, or protect public safety, thereby protecting the vulnerable and allowing for full flourishing of the common good. At the same time, one must be careful about respecting autonomy by allowing those who consciences do not allow them to be vaccinated to refuse. Because COVID-19 knowledge is rapidly changing as more information is known and the virus mutates, the conditions under which mandates are ethical change as well. At present, since vaccines prevent severe infection and death in high-risk individuals with added benefit for those who are vaccinated and have a history of infection, mandates can be imposed on those individuals. With an estimated 95% of the US population believed to have been infected and prior history of infection shown to be as effective as vaccination, with immunity lasting at least 500 days, and ability to prevent spread unknown at present but limited at best in the past, the vaccines therefore cannot be ethically mandated for those who are low risk for the versions released September 2023 based on information as of October 2023.

Is There Such a Thing as Theological Medicine?

The idea that science must be understood in existential contradiction to religion and even theology is more of a conviction than a philosophical or experiential necessity. Indeed, we may now propose "Theological Medicine" as a new terminology for a perennial reality: that most physicians, health care providers, patients, and their caretakers experience the reality of illness within a theological framework, at least for those who have some degree of spiritual or religious belief. Developing a curriculum in Theological Medicine could develop a mechanism to offer appropriate training to healthcare providers. Such a course would have to be created and delivered by experienced physicians and nursing staff, spiritual advisors, clergy representatives such as pastors or priests from different churches or faith communities, bioethicists, psychologists, social workers, psychotherapists, patient support group members, members of institutional review boards, researchers, and even legal advisors, if available. Continuing professional education requirements also create an opportunity to introduce and evaluate competency in theological medicine, an emerging discipline that could add significant value to the lived experience of medical practice which remains based on the uniquely rich relationship between physician and patient.

Defining Biomarkers in Stem Cell-Derived Tissue Constructs for Drug and Disease Screening.

The development of stem cell-derived tissue constructs (SCTCs) for clinical applications, including regenerative medicine, drug and disease screening offers significant hope for detecting and treating intractable disorders. SCTCs display a variety of biomarkers that can be used to understand biological mechanisms, assess drug interactions, and predict disease. Although SCTCs can be derived from patients and share the same genetic make-up, they are nevertheless distinct from human patients in many significant ways, which can undermine the clinical significance of measurements in SCTCs. This study defines biomarkers, how they apply to SCTCs, and clarifies specific ethical issues associated with the use of SCTCs for drug and disease screening.

The medicalization of ethics or ethicalization of neuroscience: Toward a conceptual re-examination.

Thinking With a growing body of brain science, the research and technological interventions in neuroscience have led to the rise of some ethical, moral, legal, conceptual, and socioeconomic problems. These problems and the need to establish an intellectual framework to approach them framed the base of Neuroethics. Most conveniently, the normative definition of Neuroethics is declared as ethics of neuroscience and neuroscience of ethics. However, there are more critical issues to define and frame the conceptual structure of the field. The current naturalist-positivist vision in neuroscience will extend the concept that human behavior, such as decision-making, consciousness, character, and moral intuitions, are mechanical features of a machine. Arguments from philosophical and anthropological views arose around this definition, focusing on the reductionist nature of merely a positive view of the human mind and behavior. Thinking through the pearls of such an approach and what would be at stake if we fail to recognize the importance of the philosophical-anthropological aspect of neuroscience, we first review different definitions and critics of the field, then proceed to discuss two concepts of Ethicalization and Medicalization. These concepts clearly show the established positivist-naturalist view in bioethics and the issues it caused. To better understand these two concepts, we use existing discussions and literature around them in bioethics. By reviewing the existing literature and adding a philosophical view of the field, we aim to add a new approach to the field of Neuroethics. We focus on adopting an interdisciplinary approach to Neuroethics to provide the needed background vision and theory to discuss interdisciplinary issues and enable scholars and theorists to reframe the fundamental issues of the field, such as the nature and scope of Neuroethics.

Respect for bioethical principles and human rights in prisons: a systematic review on the state of the art.

BACKGROUND: Respect for human rights and bioethical principles in prisons is a crucial aspect of society and is proportional to the well-being of the general population. To date, these ethical principles have been lacking in prisons and prisoners are victims of abuse with strong repercussions on their physical and mental health. METHODS: A systematic review was performed, through a MESH of the following words (bioethics) AND (prison), (ethics) AND (prison), (bioethics) AND (jail), (ethics) AND (jail), (bioethics) AND (penitentiary), (ethics) AND (penitentiary), (prison) AND (human rights). Inclusion and exclusion criteria were defined and after PRISMA, 17 articles were included in the systematic review. RESULTS: Of the 17 articles, most were prevalence studies (n.5) or surveys (n.4), followed by cross-sectional studies (n.3), qualitative studies (n.1), retrospective (n.1) and an explanatory sequential mixed-methods study design (n.1). In most cases, the studies associated bioethics with prisoners' access to treatment for various pathologies such as vaccinations, tuberculosis, hepatitis, HIV, it was also found that bioethics in prisons was related to the mental health of prisoners, disability, ageing, the condition of women, the risk of suicide or with the request for end-of-life by prisoners. The results showed shortcomings in the system of maintaining bioethical principles and respect for human rights. CONCLUSIONS: Prisoners, in fact, find it difficult to access care, and have an increased risk of suicide and disability. Furthermore, they are often used as improper organ donors and have constrained autonomy that also compromises their willingness to have end-of-life treatments. In conclusion, prison staff (doctors, nurses, warders, managers) must undergo continuous refresher courses to ensure compliance with ethical principles and human rights in prisons.

How Ohio public library systems respond to opioid-related substance use: a descriptive analysis of survey results.

BACKGROUND: Public libraries in the United States have experienced increases in opioid-related substance use in their communities and on their premises. This includes fatal and non-fatal overdose events. Some libraries have adopted response measures in their branches to deter substance use or prevent overdose. A small number of libraries around the nation have decided to stock the opioid antagonist naloxone (Narcan) for staff to administer to patrons who experience overdose. This response measure has generated extensive media attention. Although Ohio ranks fourth in age-adjusted drug mortality rate in the United States, there has been no investigation of whether Ohio libraries are observing opioid-related transactions, consumption, and/or overdose events, or which measures they have adopted in response to these activities. We conducted a multimethod survey with Ohio public library directors to identify the response measures they have adopted. We present descriptive findings from the quantitative and qualitative items in our survey. METHODS: We conducted a cross-sectional 54-item multimethod survey of public library system directors (one per system) in Ohio. Directors of each of Ohio's public library systems were invited to participate via email. RESULTS: Of 251 library systems, 56 responded (22.3% response rate), with 34 respondents (60.7%) indicating awareness of opioid-related transactions, consumption, and/or overdose on their premises. Most (n = 43, 76.8%) did not stock naloxone in their buildings. Over half (n = 34, 60.7%) reported implementing one or more non-naloxone response measures. These measures focus on improving security for staff and patrons, deterring opioid-related transactions (purchases and exchanges) and consumption, and providing educational events on substance use. Nearly half (n = 25, 47.2%) partner with community organizations to provide opioid response measures. A similar proportion reported adequate funding to respond to opioid-related substance use (n = 23, 45.1%), and most (n = 38, 74.5%) reported adequate support from their boards and communities. Few respondents have implemented evaluations of their response measures. CONCLUSIONS: Ohio public libraries are responding to evidence of opioid-related transactions, consumption, and/or overdose on their premises with a range of measures that focus on substance use prevention and deterrence. Most Ohio library systems do not stock naloxone. Respondents indicated they prefer to call 911 and let first responders handle overdose events. The majority of respondents indicated their library systems have political capacity to respond to evidence of opioid-related substance use on their premises, but have limited operational and functional capacity. Findings suggest the need to revisit assumptions that public libraries are willing to stock naloxone to respond to overdose events, and that libraries have the resources to respond robustly to opioid-related transactions, consumption, and/or overdose on their premises.

Electro-Immobilisation and Fish Welfare: An Investigation into Stress, Consciousness, and Physiological Aspects During Slaughter.

The aquaculture industry frequently employs various slaughter methods that subject fish to inhumane conditions, resulting in significant suffering. This study examined the effects of electrical method on the welfare of farmed fish (Mesopotamichthys sharpeyi) compared to air asphyxiation. Fish captured with electricity exhibited calm behavior until death, in contrast to fish treated with air asphyxiation, which exhibited violent responses within 4 minutes of capture. The electrical method achieved a complete state of unconsciousness 7 minutes faster than air asphyxiation. Our results show that air asphyxiation raised cortisol levels more than the electrical method, with no significant difference in glucose and lactate concentrations. Electrically treated fish had higher superoxide dismutase and liver-reduced glutathione levels, while suffocated fish showed elevated GSH and liver catalase levels. Radiographs revealed no fractures or skeletal changes. Electrical stunning had no effect on gill tissue, but caused brain tissue hemorrhage, whereas air asphyxiation caused less damage. Air asphyxiation caused gill tissue issues but less brain damage. Consciousness loss is crucial for humane practices. Specific electrical currents (110V for 30s) could improve aquaculture and fish welfare.

Value change, reprogenetic technologies, and the axiological underpinnings of reproductive choice.

Value change is a phenomenon that is gaining increasing attention in ethical analyses of technologies. However, a comprehensive study of how reprogenetic technologies and values coevolve is lacking. To remedy this gap, in this overview article, I address the relationship between reprogenetics and value change. This contribution thus argues for the importance of investigating the phenomenon of value change in relation to the technological controversies discussed in bioethics. To meet this goal, I begin by clarifying, first, how technologies shape reproductive choice. I then clarify what "values" and "moral values" are, how reprogenetic technologies are value laden, and what values are often discussed in reprogenetics debates. Next, I show five types of value changes that have occurred in advance in reproductive and genetic technologies. Finally, I argue for the bioethical relevance of discussing future techno-value change, pointing out the descriptive and normative challenges of this philosophical endeavor.

[Digital health in Latin America: current legislation and ethical aspectsSaúde digital na América Latina: legislação atual e aspectos éticos]. / Salud digital en América Latina: legislación actual y aspectos éticos.

Objectives: Describe the current legislation on electronic medical records (EMR) and telehealth in Latin American countries and analyze the treatment of confidentiality and professional secrecy. Methods: Between March and September 2022, a survey of the regulations in force in 21 Latin American countries was conducted at two levels: the existence of legislation on EMR and telehealth, and the treatment of confidentiality and professional secrecy in EMR and telehealth. A data extraction form was prepared for each country. Data were collected from official on-line sources. The information was analyzed qualitatively and synthesized in tables when possible. Results: The use of EMR is legally regulated in 16 countries. Nineteen countries have legislation on telehealth. All the countries analyzed safeguard confidentiality and professional secrecy through regulations. However, confidentiality and professional secrecy are mentioned in 11 countries in the context of telehealth, and in only nine countries in the context of EMR. Conclusions: Since the start of this century, Latin America has made progress in the legislation of digital tools for health care, such as EMR and telehealth. There is also interest in ethical issues related to the use of EMR and telehealth, particularly confidentiality and professional secrecy, aspects that should be strengthened in digital health.

Objetivo: Descrever a legislação vigente sobre prontuários eletrônicos e telessaúde nos países da América Latina e analisar o tratamento da confidencialidade e do sigilo profissional. Métodos: Entre março e setembro de 2022, realizou-se um levantamento sobre a regulamentação vigente nos 21 países latino-americanos incluídos no estudo, em dois níveis: i) existência de legislação sobre prontuários eletrônicos e telessaúde; e ii) tratamento da confidencialidade e do sigilo profissional em prontuários eletrônicos e telessaúde. Uma planilha para extração de dados foi elaborada para cada país. Os dados foram coletados de fontes oficiais disponíveis on-line. Foi realizada uma análise qualitativa das informações, que foram resumidas em tabelas, quando possível. Resultados: O uso dos prontuários eletrônicos é legalmente regulamentado em 16 países. Quanto à telessaúde, 19 países têm legislação sobre essa ferramenta. Todos os países analisados protegem a confidencialidade e o sigilo profissional por meio de regulamentação. No entanto, no contexto da telessaúde, eles são mencionados em 11 países; já no contexto dos prontuários eletrônicos, em apenas 9 países. Conclusões: Desde o início dos anos 2000, a América Latina vem avançando em relação à legislação sobre ferramentas digitais na atenção à saúde, como prontuários eletrônicos e telessaúde. Há também interesse nas questões éticas relacionadas ao uso de prontuários eletrônicos e telessaúde, especialmente em relação à confidencialidade e ao sigilo profissional, embora esses aspectos precisem ser reforçados na saúde digital.

Ethical Risks of Systematic Menstrual Tracking in Sport.

In this article it will be concluded that systematic menstrual tracking in women's sport has the potential to cause harm to athletes. Since the ruling of Dobbs v. Jackson Women's Health Organization (2022) in the United States, concerns regarding menstrual health tracking have arisen. Research suggests that the menstrual tracking of female athletes presents potential risks to "women's autonomy, privacy, and safety in sport" (Casto 2022, 1725). At present, the repercussions of systematic menstrual tracking are particularly under-scrutinized, and this paper seeks to combine novel research in the sport sciences with present ethical debates in the philosophy of sports. Utilizing Beauvoir's feminist philosophy (2011), this paper argues that systematic menstrual tracking may contribute to the wider system of women's oppression by exploiting female athletes, as well as enabling the internalization of submissive behaviour in cultures where athletes are expected to comply unquestioningly. Five policy recommendations are made concerning autonomy, informed consent, education, safeguarding and data access. The overall findings of this paper propose that a more in-depth understanding of the links between data, privacy, and the menstrual cycle are required by sports organizations and governing bodies if athletes are to be protected in a future where systematic menstrual tracking is inevitable.

Exploring the Impact of COVID-19 Restrictions on Nursing Home Residents', Families', and Staff's Perceptions of Bioethical Principles: A Qualitative Study.

In this study, we employed a pre-interview survey and conducted interviews with nursing home staff members and residents/family members to understand their perceptions of whether the COVID-19 restrictions fulfilled obligations to nursing home residents under various principles, including autonomy, beneficence, nonmaleficence, justice, and privacy. We conducted 20 semi-structured interviews with staff members from 14 facilities, and 20 with residents and/or family members from 13 facilities. We used a qualitative descriptive study design and thematic analysis methodology to analyze the interviews. Findings from the pre-interview survey indicated that, compared to nursing home staff, residents and their families perceived lower adherence to bioethics principles during the pandemic. Qualitative analysis themes included specific restrictions, challenges, facility notifications, consequences, communication, and relationships between staff and residents/family members. Our study exposes the struggle to balance infection control with respecting bioethical principles in nursing homes, suggesting avenues for improving processes and policies during public health emergencies.

Ethical implications of developing RNA-based therapies for cardiovascular disorders.

The awareness concerning RNA-based therapies was boosted significantly after the successful development of COVID-19 vaccines. However, they can potentially lead to significant advances in other areas of medicine, such as oncology or chronic diseases. In recent years, there has been an exponential increase in the number of RNA-based therapies that were evaluated as potential treatments for cardiovascular disorders. One of the areas that was not explicitly assessed about these therapies is represented by their overall ethical framework. Some studies evaluate ethical issues of RNA-based treatments in general or targeting specific disorders (especially neurodegenerative) or interventions for developing RNA-based vaccines. Much less information is available regarding the ethical issues associated with developing these therapeutic strategies for cardiovascular disorders, which is the main aim of this study. We will focus our analysis on three main topics: risk-benefit analysis (including the management of public awareness about these technologies), and justice (in both research and clinical medicine).

Might the bioethical principle of individual decisional autonomy have a politically liberalizing effect on soft authoritarian communities?

According to the bioethical principle of individual decisional autonomy, the patient has a right of informed consent to any medical or experimental procedure. The principle is politically liberal by advocating significant individual freedom as guaranteed by law and secured by civil liberties. When practiced in illiberal communities, might it have a political liberalizing effect? I respond first by analyzing cross-national norms of individual decisional autonomy to identify tensions with illiberal community; second, by examining examining Singapore in a single case study to show that liberal bioethics does not promote political liberalization; and third, by showing that the possibility of practicing liberal bioethics in research, clinically as well as in education, does not require a democratic order, and that liberal bioethics is unlikely to encourage the liberalization of illiberal political communities. Hence, it may never contribute to the development of globally effective cross-national norms for the legal regulation of bioethical research and clinical practice. Fourth, to bolster this analysis, I anticipate several possible objections to various of its aspects.

Conceptual competence in psychiatric training: building a culture of conceptual inquiry.

Building a culture of conceptual inquiry in psychiatric training requires the development of conceptual competence: the ability to identify and examine assumptions that constitute the philosophical foundations of clinical care and scientific investigation in psychiatry. In this article, we argue for the importance of such competence and illustrate approaches to instilling it through examples drawn from our collective experiences as psychiatric educators.

Islamic Viewpoints on Opportunistic Sex Selection of IVF Embryos upon doing Preimplantation Genetic Testing for Preventing Genetic Diseases.

In recent years, preimplantation genetic testing (PGT) of IVF embryos have gained much traction in clinical assisted reproduction for preventing various genetic defects, including Down syndrome. However, such genetic tests inevitably reveal the sex of IVF embryos by identifying the sex (X and Y) chromosomes. In many countries with less stringent IVF regulations, information on the sex of embryos that are tested to be genetically normal is readily shared with patients. This would thus present Muslim patients with unintended opportunities for sex selection based on personal or social biases without any pressing need or valid medical reason. Additionally, there are other patients who claim using PGT for preventing genetic defects as a pretext or "convenient excuse," with a secret intention to do sex selection when it is banned in their home country. Currently, non-medical sex selection is a highly-controversial and hotly debated issue in Islam, because there is generally a strong preference for having sons over daughters due to widespread cultural norms of elderly parents depending on their sons for financial support, as well as the need for male heirs to continue the family lineage within the backdrop of local patriarchal cultures. There is a risk of gender imbalance and social disequilibrium occurring in Islamic societies due to prevalent sex selection. Hence, the question is whether opportunistic sex selection with PGT would contravene Islamic ethics and principles, which will thus be discussed here.

[Non-therapeutic hysterectomy in Mexican young females with intellectual disability: a problematized reality]. / Histerectomía no terapéutica en jóvenes mexicanas con discapacidad intelectual: una realidad problematizada.

Background: Non-therapeutic hysterectomy in girls and adolescents with intellectual disability (ID) is an acceptable practice, even when there is a lack of prescriptive ethical reason. Objectives: To determine the magnitude of the practice of hysterectomy in girls and adolescents with ID, and explore the emic factors associated with this procedure. Material and methods: Multicenter, intersectoral study with a mixed methods design. Results: The quantitative results showed that 50 of 234 reported hysterectomies corresponded to females with ID. Average age at the time of surgery was 15 ± 2.9 years. Prophylactic abdominal hysterectomy was the most common procedure, and the justifications for it were "fertility control", "menstrual hygiene management", and "risk of sexual abuse". A qualitative analysis of 15 focus groups revealed that parents' main concern was how to manage their daughters' index disease and reproductive health; they perceived menstruation positively; they expressed their fear of dying and leaving them without support, and emphasized fertility control; none of them approved hysterectomy. Conclusions: The bodies that define health policies need to create a new philosophy that avoids the reductionist approach of current biomedical model, which separates (in the health-disease process) our interdependence with other humans.

Antecedentes: La histerectomía no terapéutica en niñas y adolescentes con discapacidad intelectual (DI) es una práctica aceptable, aun cuando se carece de razón ética prescriptiva. Objetivos: Determinar la magnitud de la práctica de la histerectomía en niñas y adolescentes con DI, y explorar los factores emic asociados a esta práctica. Material y métodos: Estudio multicéntrico e intersectorial con método mixto. Resultados: Los resultados cuantitativos mostraron que 50 de 234 histerectomías reportadas correspondieron a mujeres con DI. El promedio de edad a la cirugía fue de 15 ± 2.9 años. La histerectomía abdominal profiláctica fue el procedimiento predominante y las justificaciones fueron control de fertilidad, manejo de la higiene menstrual y riesgo de abuso sexual. El análisis cualitativo de 15 grupos focales reveló que la principal preocupación de los padres fue cómo manejar la enfermedad índice y la salud reproductiva de sus hijas; percibieron positivamente la menstruación, expresaron su miedo a morir y dejarlas sin ayuda, resaltaron el control de la fertilidad y ninguno aprobó la histerectomía. Conclusiones: Los organismos que definen políticas de salud necesitan crear una nueva filosofía que evite el enfoque reduccionista del actual modelo biomédico, el cual separa (en el proceso salud-enfermedad) la interdependencia entre los seres humanos.

A Biophilosophical Approach to the Determination of Brain Death.

Technical and clinical developments have raised challenging questions about the concept and practice of brain death, culminating in recent calls for revision of the Uniform Determination of Death Act (UDDA), which established a whole brain standard for neurologic death. Proposed changes range from abandoning the concept of brain death altogether to suggesting that current clinical practice simply should be codified as the legal standard for determining death by neurologic criteria (even while acknowledging that significant functions of the whole brain might persist). We propose a middle ground, clarifying why whole brain death is a conceptually sound standard for declaring death, and offering procedural suggestions for increasing certainty that this standard has been met. Our approach recognizes that whole brain death is a functional, not merely anatomic, determination, and incorporates an understanding of the difficulties inherent in making empirical judgments in medicine. We conclude that whole brain death is the most defensible standard for determining neurologic death-philosophically, biologically, and socially-and ought to be maintained.