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1.
Perspect Biol Med ; 65(2): 171-178, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35938424

RESUMO

This article uses multiple interwoven personal narratives to explicate the relationships among several concepts crucial to bioethics brought into focus by Robert Perske's 1972 article on "The Dignity of Risk," including dignity, risk, paradox, disability, autonomy, uncertainty, diagnosis, and prognosis. The use of personal narrative as a form of evidence and a knowledge-making method allows for the exploration of the meaning-making work of language and story and the introduction of humanities and social science concepts such as stigma management and dignity maintenance into Perske's concept of the dignity of risk. The personal narratives the article draws include Mark, a character in Perske's article; W. E. B. Du Bois; Frantz Fanon; and myself. Finally, the article calls for humility in medical science's predictive narratives for all patients, but particularly for people with disabilities.


Assuntos
Bioética , Pessoalidade , Humanos , Respeito
2.
Perspect Biol Med ; 65(2): 207-212, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35938428

RESUMO

As a clinical ethics consultant, I've received numerous consultation requests from health-care providers that reflect the tension at the heart of the concept of dignity of risk, often presented in this form: "The patient wants to [do something that we think is unsafe]. How can we change their mind or stop them?" These consultation requests are almost always framed within a medicalized conception of risk: each is presented as a medical provider's concern that a patient's behavior or choice will lead to a specific physiological harm that the medical team wishes to avoid. However, this medicalized perspective neglects the subjective nature of self-determined choices and ignores important aspects of how patients integrate their disability or illness into a broader narrative of how their preferences and actions fit within their self-understanding. In this article, I offer ways to reframe provider perspectives as an attempt to foster an empathetic understanding of "risky" patient preferences at the physiological, environmental, and psychosocial levels.


Assuntos
Consultoria Ética , Eticistas , Ética Clínica , Humanos , Narração , Autonomia Pessoal
3.
Perspect Biol Med ; 65(2): 232-241, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35938431

RESUMO

Hospitals have both a regulatory and an ethical mandate to craft a safe discharge plan for all patients. These plans can become a source of conflict between clinicians and patients when they have differing conceptions of safety and best interests. In bioethics principles this conflict can be characterized as the tension between the patient's right to make medical decisions in accordance with their values, or autonomy, and the clinician's obligation to provide best care to their patients, or beneficence. Employed independently, these principles can be limiting and may not accommodate the nuanced narrative of patients who lack decisional capacity but have expressed clear preferences about where they wish to live. Utilizing case-based discussion, this article explores how the inclusion of Robert Perske's dignity of risk principal in bioethics consultation can support clinicians in expanding their conceptions of beneficence and safety, providing the team with the freedom to craft discharge plans that keep the patient at the center of the narrative.


Assuntos
Bioética , Autonomia Pessoal , Beneficência , Humanos , Encaminhamento e Consulta , Respeito
4.
J Med Philos ; 47(3): 387-406, 2022 Aug 04.
Artigo em Inglês | MEDLINE | ID: mdl-35926173

RESUMO

Although the term integration is central to the definition of brain death, there is little agreement on what it means. Through a genealogical analysis, this essay argues that there have been two primary ways of understanding integration in regard to organismal wholeness. One stems from neuroscience, focusing on the role of the brain in responding to external stimuli, which was taken up in phenomenological accounts of life. A second, arising out of cybernetics, focuses on the brain's role in homeostasis. Recent debates over brain death are largely over this cybernetic understanding of integration. However, the phenomenological understanding of organismal wholeness can be seen in arguments by the President's Council on Bioethics in favor of brain death. This essay argues that the cybernetic understanding of life is problematic and should be discarded. A phenomenological understanding of life can provide a better basis for arguments over definitions of life and death.


Assuntos
Bioética , Morte Encefálica , Encéfalo , Cibernética , Dissidências e Disputas , Humanos
6.
Pediatr Clin North Am ; 69(4): 739-758, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-35934497

RESUMO

Despite the continuing integration of digital outreach tools into adolescent preventive services, adaptive guidance for their ethical use remains limited. In this configurative review, we synthesize the ad hoc, applied digital bioethics developed in adolescent human immunodeficiency virus prevention science. By focusing on generalizable technological affordances, while balancing privacy and autonomy, we offer strategies for identifying potential technologically mediated harms that can transcend specific platforms, tools, or the knowledge levels of individual clinicians. Clinical vignettes illustrate the application of these strategies.


Assuntos
Medicina do Comportamento , Bioética , Infecções por HIV , Adolescente , Comunicação , Humanos
10.
Gac Sanit ; 36 Suppl 1: S51-S55, 2022.
Artigo em Espanhol | MEDLINE | ID: mdl-35781149

RESUMO

The COVID-19 pandemic has been a clinical challenge, but also a legal and bioethical one. These three fundamental pillars are developed in the approach to prioritizing health resources in pandemic, clinical criteria, corresponding legal framework and applicable ethical principles. Initially, clinical criteria were applied to identify patients with the best survival prognosis, combining a clinical evaluation and the use of short-term and long-term prognostic variables. But the decision to prioritize the care of one patient over another has a legal-political burden, which poses a risk of falling into discrimination since fundamental rights are at stake. The prioritization criteria must be based on principles that reflect as a vehicle philosophy that which we have constitutionally assumed as a social and democratic State of Law, which did not respond to utilitarianism but to personalism. Any philosophy of resource distribution must bear in mind the scientific and constitutional perspective and, with them, those of fundamental rights and bioethical principles. In the prioritization of resources, ethical principles must be consolidated such as respect for the human dignity, the principle of necessity (equal need, equal access to the resource), the principle of equity (which advises prioritizing the most vulnerable population groups), transparency (fundamental in society's trust) and the principle of reciprocity (which requires protecting the sectors of the population that take more risks), among others.


Assuntos
COVID-19 , Recursos em Saúde , COVID-19/epidemiologia , Humanos , Pandemias , Populações Vulneráveis
11.
J Law Med Ethics ; 50(2): 339-347, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35894577

RESUMO

Research on opioid use in pregnancy is critically important to understand how the opioid epidemic has affected a generation of children, but also raises significant ethical and legal challenges. Embedded ethicists can help to fill the gaps in ethics oversight for such research, but further guidance is needed to help strike the balance between integration and independence.


Assuntos
Analgésicos Opioides , Eticistas , Criança , Feminino , Humanos , Gravidez
12.
F1000Res ; 11: 195, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35844817

RESUMO

50 years after its introduction, brain death remains controversial among scholars. The debates focus on one question: is brain death a good criterion for determining death? This question has been answered from various perspectives: medical, metaphysical, ethical, and legal or political. Most authors either defend the criterion as it is, propose some minor or major revisions, or advocate abandoning it and finding better solutions to the problems that brain death was intended to solve when it was introduced. In short, debates about brain death have been characterized by partisanship, for or against. Here I plead for a non-partisan approach that has been overlooked in the literature: the epistemological or philosophy of science approach. Some scholars claim that human death is a matter of fact, a biological phenomenon whose occurrence can be determined empirically, based on science. We should take this claim seriously, whether we agree with it or not. The question is: how do we know that human death is a scientific matter of fact? Taking the epistemological approach means, among other things, examining how the determination of human death became an object of scientific inquiry, exploring the nature of the brain death criterion itself, and analysing the meaning of its core concepts such as "irreversibility" and "functions".


Assuntos
Bioética , Morte Encefálica , Humanos , Princípios Morais , Filosofia
13.
Neurol India ; 70(3): 845-848, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35864607

RESUMO

Vulnerable moments, panic, and uncertainties are the hallmarks of pandemic outbreaks. Medicolegal challenges add further injury to the public health chaos. Although containing the pandemic is of prime concern, medicolegal and ethical uncertainties further complicate ideal standards of medical care. Constraints in the provision of medical care, resource limitations, infectivity risks, burgeoning costs, and pandemic control laws, create extremely precarious medicolegal situations. Ethics and medical negligence laws may, at times, be trampled upon by the overwhelming urgencies of the pandemic. Hence, we attempt to review basic ethical and medicolegal principles that are put to test by pandemic urgencies. We aim to study these vulnerable medicolegal moments in neurosurgeons'/neurologists' clinical and research practices during the COVID-19 times from our own practice and contemporary literature on COVID practices, medicolegal sciences, and pandemic healthcare directives. We also review supportive measures and safeguards to brace these vulnerable moments effectively. We compile medicolegally sound and ideal practice parameters, including the basic principles for a restructured informed surgical consent ensuring a medicolegally and ethically sound practice. Several ethical and medicolegal exigencies are part of medical practice during a pandemic. Special care should be taken to avoid violations of medicolegal and ethical proprieties during the urgencies of medical care and research. Restructuring of contracts like the informed consent would also count as an ideal practice modification in a pandemic.


Assuntos
Bioética , COVID-19 , Neurologistas , Neurocirurgiões , Humanos , Consentimento Livre e Esclarecido , Imperícia , Pandemias/prevenção & controle
14.
Gac Med Mex ; 158(3): 136-140, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35894742

RESUMO

INTRODUCTION: Bioethics, as a reference framework for collective decision-making in plural societies, represents a valuable tool for the development, implementation and evaluation of public policies in order to address structural deficiencies and contexts of vulnerability that disproportionately affect certain sectors of the population. OBJECTIVE: To provide guidelines for the strengthening of actions, programs and public policies aimed at addressing the ethical dilemmas and challenges faced by health personnel. METHODS: A documentary research process was carried out on the moral context faced by health personnel at the federal level. RESULTS: Health budget programs show important gaps in their design, implementation or evaluation, which give rise to various ethical and human rights problems. CONCLUSIONS: Given the difficulty for reaching agreements or generating common understanding with regard to public health problems, bioethics contributes to a systematic approach to the challenges of the National Health System, for the safeguarding of the human rights of users, as well as of the integrity of its institutions.


INTRODUCCIÓN: La bioética como marco referencial para la toma de decisiones colectivas en sociedades plurales representa una valiosa herramienta para el desarrollo, implementación y evaluación de las políticas públicas a fin de abordar deficiencias estructurales y contextos de vulnerabilidad que afectan desproporcionalmente a ciertos sectores de la población. OBJETIVO: Brindar pautas para el fortalecimiento de las acciones, programas y políticas públicas orientadas al abordaje de los dilemas y desafíos éticos que enfrenta el personal de salud. MÉTODOS: Se llevó a cabo un proceso de investigación documental sobre el contexto moral que enfrenta el personal de salud a nivel federal. RESULTADOS: Los programas presupuestarios en salud presentan lagunas importantes en su diseño, implementación o evaluación, que dan lugar a diversos problemas éticos y de derechos humanos. CONCLUSIONES: Ante la dificultad de alcanzar acuerdos o generar entendimiento común en relación con problemas públicos en salud, la bioética contribuye al abordamiento sistemático de los desafíos del Sistema Nacional de Salud, para la salvaguarda de los derechos humanos de los usuarios, como también de la integridad de sus instituciones.


Assuntos
Bioética , Política de Saúde , Saúde Pública , Direitos Humanos , Humanos , México , Política Pública
15.
BMJ Open ; 12(7): e063456, 2022 07 12.
Artigo em Inglês | MEDLINE | ID: mdl-35820756

RESUMO

INTRODUCTION: Genomic data constitute a valuable adjunct to routine surveillance that can guide programmatic decisions to reduce the burden of infectious diseases. However, genomic capacities remain low in Africa. This study aims to operationalise a functional malaria molecular surveillance system in Mozambique for guiding malaria control and elimination. METHODS AND ANALYSES: This prospective surveillance study seeks to generate Plasmodium falciparum genetic data to (1) monitor molecular markers of drug resistance and deletions in rapid diagnostic test targets; (2) characterise transmission sources in low transmission settings and (3) quantify transmission levels and the effectiveness of antimalarial interventions. The study will take place across 19 districts in nine provinces (Maputo city, Maputo, Gaza, Inhambane, Niassa, Manica, Nampula, Zambézia and Sofala) which span a range of transmission strata, geographies and malaria intervention types. Dried blood spot samples and rapid diagnostic tests will be collected across the study districts in 2022 and 2023 through a combination of dense (all malaria clinical cases) and targeted (a selection of malaria clinical cases) sampling. Pregnant women attending their first antenatal care visit will also be included to assess their value for molecular surveillance. We will use a multiplex amplicon-based next-generation sequencing approach targeting informative single nucleotide polymorphisms, gene deletions and microhaplotypes. Genetic data will be incorporated into epidemiological and transmission models to identify the most informative relationship between genetic features, sources of malaria transmission and programmatic effectiveness of new malaria interventions. Strategic genomic information will be ultimately integrated into the national malaria information and surveillance system to improve the use of the genetic information for programmatic decision-making. ETHICS AND DISSEMINATION: The protocol was reviewed and approved by the institutional (CISM) and national ethics committees of Mozambique (Comité Nacional de Bioética para Saúde) and Spain (Hospital Clinic of Barcelona). Project results will be presented to all stakeholders and published in open-access journals. TRIAL REGISTRATION NUMBER: NCT05306067.


Assuntos
Antimaláricos , Malária , Antimaláricos/farmacologia , Antimaláricos/uso terapêutico , Resistência a Medicamentos/genética , Feminino , Deleção de Genes , Humanos , Malária/epidemiologia , Moçambique/epidemiologia , Estudos Multicêntricos como Assunto , Plasmodium falciparum/genética , Gravidez , Estudos Prospectivos
16.
Artigo em Inglês | MEDLINE | ID: mdl-35886236

RESUMO

Even though various countries' overall policy for dealing with the pandemic was not particularly innovative, the pandemic was perceived as a unique crisis. "COVID exceptionalism" has seemed to create "a new normal" that we all need to "learn to live with". The main change in perspective, while not new for public health experts, is that health exists within a social and political context. While public health ethics has turned out to be an important discipline, there is a long way to its wider acceptance. Entering the "new normal" calls for a wider embrace of public health approaches to ethics. The renewed emphasis on understanding health as a social concept encompasses central normative implications in relation to dealing with COVID-19 and in relation to dealing with other global crises, chiefly climate change. We argue that entering the era of "the new normal" in healthcare requires a nuanced understanding of the relationship between the individual and society and demands the formulation of a new system of bioethics focused on the concept of solidarity as a central value in public health. Such a concept should refer to the fact that in the "new normal", risks require new social and political formations of standing together in confronting risks that cross national, cultural, and identity borders. Forming and expanding solidarity in health and healthcare, we argue, is the main normative challenge for public health today.


Assuntos
Bioética , COVID-19 , COVID-19/epidemiologia , Humanos , Princípios Morais , Pandemias , Saúde Pública
17.
BMC Med Ethics ; 23(1): 72, 2022 07 13.
Artigo em Inglês | MEDLINE | ID: mdl-35831888

RESUMO

BACKGROUND: In Saudi clinical settings, benevolent family care that reflects strongly held sociocultural values is commonly used to justify overriding respect for patient autonomy. Because the welfare of individuals is commonly regarded as inseparable from the welfare of their family as a whole, these values are widely believed to obligate the family to protect the welfare of its members by, for example, giving the family authority over what healthcare practitioners disclose to patients about their diagnoses and prognoses and preventing them from making informed decisions about their healthcare. DISCUSSION: Family dominance over the healthcare decisions of competent patients is ethically problematic when the family prevent healthcare practitioners from disclosing diagnoses and prognoses to patients who have the capacity to consent and make decisions in their own best interests. Thus, the author holds that sociocultural values ought to be respected only when they do not prevent competent patients from knowing their diagnoses and prognoses or prevent them from making their own decisions. CONCLUSION: Healthcare practitioners should not allow patients' families to control what can or cannot be disclosed to competent patients. This is particularly important when patients are approaching death so that they may address their material and spiritual wishes-among other needs-as they prepare for death. Justification for this position is drawn from the Maqasid Al-Shariah-based Islamic bioethics approach, from which it is possible to argue that the harm of withholding diagnoses and prognoses from patients who are imminently dying outweighs the potential benefits.


Assuntos
Bioética , Revelação , Tomada de Decisões , Humanos , Islamismo , Autonomia Pessoal , Prognóstico , Arábia Saudita
19.
eNeuro ; 9(3)2022.
Artigo em Inglês | MEDLINE | ID: mdl-35697510
20.
Hastings Cent Rep ; 52(3): 37-48, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-35678515

RESUMO

The impression of bioethicists as "dangerous," as articulated in Mouth Magazine in 1994, has continued to be a theme in the disability movement. We respond to three common responses by bioethicists to this impression-namely, this is from the past, and bioethicists are different now; this is an angry and extremist position; and the Americans with Disabilities Act and other disability rights and justice efforts have solved historical inequities. We draw on the historical record and on our collective experiences as bioethicists engaged in clinical consultation and education and as the founding, former, and current directors of a program focused on disability and rehabilitation ethics to argue that ableism and unexamined assumptions about people with disabilities have persisted in bioethics despite decades of counternarratives, research, and divergent perspectives. Ableism and such assumptions can lead to health care decisions that are prone to bias, mistreatment, and a lack of consideration of viable options for living with disability. As the field of bioethics moves toward certification examinations and as new generations join the field's ranks, these problems need to be rectified with solutions at the individual, interpersonal, and structural levels. It is past time to take disability seriously.


Assuntos
Bioética , Pessoas com Deficiência , Bioética/educação , Eticistas , Humanos , Justiça Social
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