Toward a Social Bioethics Through Interpretivism: A Framework for Healthcare Ethics.

Recent global events demonstrate that analytical frameworks to aid professionals in healthcare ethics must consider the pervasive role of social structures in the emergence of bioethical issues. To address this, the authors propose a new sociologically informed approach to healthcare ethics that they term "social bioethics." Their approach is animated by the interpretive social sciences to highlight how social structures operate vis-à-vis the everyday practices and moral reasoning of individuals, a phenomenon known as social discourse. As an exemplar, the authors use social bioethics to reframe common ethical issues in psychiatric services and discuss potential implications. Lastly, the authors discuss how social bioethics illuminates the ways healthcare ethics consultants in both policy and clinical decision-making participate in and shape broader social, political, and economic systems, which then cyclically informs the design and delivery of healthcare.

Health Equity, History, and a New Presidential Bioethics Commission: Lessons from the "Lost" Reports.

Convening a national bioethics commission has historically been one of the most powerful bioethical legacies a US presidential administration can undertake. The Biden Administration has not yet created such a commission; here we argue that centering health equity and healthcare access would provide a vital framework for a new commission's legacy. Moreover, we demonstrate two crucial historical episodes when American presidents appointed commissions to examine the practical and ethical implications of these very issues. We turn first to the 1952 President's Commission report on "Building America's Health," a lofty vision of universal healthcare access stymied by both political conflict and unaddressed problems of racism in the era's legislation. Its rich yet incomplete account of American health inequities serves as a valuable forerunner to questions of justice in bioethics. We then explore the President's Commission's 1983 report "Securing Access to Healthcare: A Report on the Ethical Implications of Differences in the Availability of Health Services." This report took up the mantle of equity in healthcare access, again with mixed results. Only by understanding the checkered history of these overlooked, practically "lost" reports can a new era in American bioethics successfully re-center the goal of equitable health for all.

Do-not-resuscitate order in COVID-19 times: bioethics and professional ethics.

OBJECTIVE: To reflect about the do-not-resuscitation order at COVID-19 in Brazil, under bioethical focus and medical and nursing professional ethics. METHOD: Reflection study based on the principlist bioethics of Beauchamps and Childress and in professional ethics, problematizing actions, and decisions of non-resuscitation in the pandemic. RESULTS: It is important to consider the patient's clinic, appropriation of treatment goals for people with comorbidities, elderly people, with less chance of surviving to resuscitation, or less quality of life, with the palliative care team, to avoid dysthanasia, use of scarce resources and greater exposure of professionals to contamination. CONCLUSION: COVID-19 increased the vulnerabilities of professionals and patients, impacting professional decisions and conduct more widely than important values ​​such as the restriction of freedom. It propelled the population in general to rethink ethical and bioethical values ​​regarding life and death, interfering in decisions about them, supported by human dignity.

Should a Healthcare System Facilitate Racially Concordant Care for Black Patients?

Addressing racial disparities in health outcomes is an urgent priority for many health care organizations, leading health care managers to explore the potential for organization-level interventions to yield substantive health gains. In recent literature, it is suggested that Black patients who are treated by Black physicians may achieve superior health outcomes in some settings. In this case discussion, we consider a case in which a medical director considers implementing a voluntary program to promote racially concordant care for Black patients. Commentators consider the precedent for such a program, both in current informal care networks and 20th century medical history, as well as the burden such a program may place on Black physicians and the risks of reducing patients' intersectional identities to be solely about race. A subset of commentators suggest that these risks are mitigated by the voluntary nature of the program, whereas others offer caution about relying solely on Black physicians to remedy health disparities. Others view multiple paths as morally defensible but emphasize the need for managers to take proactive steps to communicate and evaluate their choices in the face of such a complex social challenge.

Ethical issues facing hematopoietic stem cell transplantation in India.

A successful Hematopoietic stem cell transplantation (HSCT) is often the only hope of survival for children suffering from a range of potentially life-threatening hematological malignancies. The financial, ethical, and emotional problems faced by the matched sibling donor and their recipient siblings during the HSCT are extremely complex and challenging. Herein, the authors have attempted to pen down these in the configuration of a poem.

What Has Covid-19 Exposed in Bioethics? Four Myths.

The Covid-19 pandemic has exposed four myths in bioethics. First, the flood of bioethics publications on how to allocate scarce resources in crisis conditions has assumed authorities would declare the onset of crisis standards of care, yet few have done so. This leaves guidelines in limbo and patients unprotected. Second, the pandemic's realities have exploded traditional boundaries between clinical, research, and public health ethics, requiring bioethics to face the interdigitation of learning, doing, and allocating. Third, without empirical research, the success or failure of ethics guidelines remains unknown, demonstrating that crafting ethics guidance is only the start. And fourth, the pandemic's glaring health inequities require new commitment to learn from communities facing extraordinary challenges. Without that new learning, bioethics methods cannot succeed. The pandemic is a wake-up call, and bioethics must rise to the challenge.

Bioethical issues and legal frameworks of surrogacy: A global perspective about the right to health and dignity.

Modern advances in assisted reproduction technology (ART) have disrupted the traditional concept of parenthood. Every year, thousands of people travel abroad from their home countries in order to circumvent restrictive legislation or to benefit from lower fees. In a similar context, surrogacy raises many bioethical and legal issues. The present paper will address the main questions arising from the debate prompted by surrogacy, focusing on international legislation, and looking critically at the different legislative models. As a result of worldwide heterogeneity in policies, legal approaches, and access to ART throughout the world, a growing number of would-be parents are seeking treatment abroad. The lack of regulation on cross-border surrogacy in low income countries can undermine the dignity and rights of women as even modest economic compensation determines a significant purchasing power. The international effort should be aimed at creating an international regulatory framework from which guidelines useful to national governments derive. An international agreement would provide a solid legal basis for the protection of surrogate women. In order to limit the economic interests linked to procreative tourism, so as to truly protect global health and women's rights, legislative uniformity is therefore necessary between the various states.

Withdrawal of intensive care during times of severe scarcity: Triage during a pandemic only upon arrival or with the inclusion of patients who are already under treatment?

Many countries have adopted new triage recommendations for use in the event that intensive care beds become scarce during the COVID-19 pandemic. In addition to establishing the exact criteria regarding whether treatment for a newly arriving patient shows a sufficient likelihood of success, it is also necessary to ask whether patients already undergoing treatment whose prospects are low should be moved into palliative care if new patients with better prospects arrive. This question has led to divergent ethical guidelines. This paper explores the distinction between withholding and withdrawing medical treatment during times of scarcity. As a first central point, the paper argues that a revival of the ethical distinction between doing and allowing would have a revisionary impact on cases of voluntary treatment withdrawal. A second systematic focus lies in the concern that withdrawal due to scarcity might be considered a physical transgression and therefore more problematic than not treating someone in the first place. In light of the persistent disagreement, especially concerning the second issue, the paper concludes with two pragmatic proposals for how to handle the ethical uncertainty: (1) triage protocols should explicitly require that intensive care attempts are designed as time-limited trials based on specified treatment goals, and this intent should be documented very clearly at the beginning of each treatment; and (2) lower survival prospects can be accepted for treatments that have already begun, compared with the respective triage rules for the initial access of patients to intensive care.

Challenging Ethical Scenarios in the Surgical Treatment of Erectile Dysfunction: A Survey of High-Volume Penile Prosthesis Surgeons.

OBJECTIVE: To investigate how surgeons approach ethically challenging scenarios that arise in penile prosthesis surgery and identify patient-related factors that impact their approach. METHODS: A survey was distributed to the Society for Urologic Prosthetic Surgeons membership consisting of 6 ethically challenging scenarios: an HIV+ patient, a patient with cognitive disability, a registered sex offender, a nonverbal patient, a litigious patient, and an uncontrolled diabetic patient whose insurance will lapse soon. Additional clinical information was provided to assess how the likelihood to offer surgery might change. The primary outcome was the likelihood of offering surgery in each scenario. RESULTS: The response rate was 15.6% (n = 29). When compared to the baseline patient, respondents had a lower likelihood of offering surgery in all scenarios except the HIV+ patient, with the lowest likelihood of offering surgery to a sex offender (P < .01). Within each scenario, factors associated with an increased odds of offering surgery included knowledge that a patient with Down Syndrome is high functioning (odds ratio [OR] 5.0, confidence interval [CI]: 1.4-17.8), that a prior sex offender is currently married (OR 16.5, CI:3.5-99.8), that a litigious patient sued a surgeon for a retained sponge (OR 6.3, CI:1.7-24.3), and that a nonverbal patient had expressed prior interest in penile prosthesis surgery (OR 4.5, CI: 1.3-16.2). CONCLUSION: Ethical principles, including respect for autonomy, nonmaleficence, beneficence, and justice, are appropriately applied by urological prosthetic surgeons when ethical challenges arise. While the likelihood of offering penile prosthesis surgery is decreased with most ethical dilemmas, specific clinical factors often augment decision-making.

Noninvasive Prenatal Testing: Views of Canadian Pregnant Women and Their Partners Regarding Pressure and Societal Concerns.

BACKGROUND: Noninvasive prenatal testing (NIPT) provides important benefits yet raises ethical concerns. We surveyed Canadian pregnant women and their partners to explore their views regarding pressure to test and terminate a pregnancy, as well as other societal impacts that may result from the routinization of NIPT. METHODS: A questionnaire was offered (March 2015 to July 2016) to pregnant women and their partners at five healthcare facilities in four Canadian provinces. RESULTS: 882 pregnant women and 395 partners completed the survey. 64% of women anticipated feeling no pressure to take the test if it were offered routinely, and 39% were not concerned about routinization leading to increased pressure to terminate a pregnancy of a fetus with Down Syndrome. Regarding other social concerns possibly resulting from routinization, pregnant women were most concerned regarding a reduction in resources available for people with Down Syndrome and their families and least concerned regarding a decrease in the population of people with Down Syndrome. CONCLUSIONS: Our findings reflect the concerns expressed by pregnant women and their partners, both personal (pressure to test, pressure to terminate) and societal (e.g., regarding potential negative impact on people with disabilities and their families). Even if most women were not concerned about feeling pressured to test due to NIPT routinization, a large minority express concerns that should not be taken lightly. Moreover, a majority of respondents were concerned regarding pressure to terminate pregnancies due to NIPT routinization as well as regarding most societal impacts they were queried on, especially the possible future reduction in resources available for people with DS and their families. Canadian policy-makers should consider these potential negative ramifications of NIPT and ensure that appropriate social policies accompany its implementation.

Análise do processo e dos conflitos éticos da implementação da Política Nacional de Saúde Integral LGBT no município do Rio de Janeiro / Analysis of the process and ethical conflicts in the implemetation of the National Policy on Comprehensive Health of LGBT in the city of Rio de Janeiro / Análisis del proceso y conflictos éticos en la implemetación de la Politica Nacional de Salud Integral de LGBT en la ciudad de Rio de Janeiro

O Sistema Único de Saúde (SUS) e suas políticas são regidos por princípios norteadores, porém, o acesso universal não é garantia do atendimento das demandas de todos. As políticas públicas voltadas aos LGBT foram criadas para combater o preconceito, a discriminação e a exclusão. Em 2011, foi instituída a Política Nacional de Saúde Integral LGBT (PNSI LGBT) entretanto, a carência de informações sobre a implementação desta no Rio de Janeiro-RJ evidencia as dificuldades de atender essa população. Esta Tese objetivou analisar o processo de implementação e os conflitos éticos envolvidos da PNSI LGBT, no município do Rio de Janeiro, através da perspectiva do acesso aos serviços de saúde. Realizou-se uma revisão sistemática da literatura e abordagem metodológica qualitativa por meio de entrevistas semiestruturadas com gestores, profissionais de saúde e usuários LGBT. As entrevistas foram gravadas e os dados analisados numa perspectiva hermenêutica dialética. A revisão da literatura ressaltou as demandas específicas de saúde LGBT, e os desafios que a PNSI LGBT enfrenta para sua plena implementação, além de ainda ser pouco explorada. As narrativas foram agrupadas em quatro categorias abordando as questões de vínculo; percepções a respeito da orientação sexual e identidade de gênero; demandas para a atenção integral à saúde LGBT; e as questões éticas sobre justiça, igualdade e equidade no acesso à saúde LGBT. As entrevistas demonstraram como os gestores, profissionais de saúde e usuários percebem o acesso à saúde da população LGBT, e o quanto a PNSI LGBT ainda é pouco conhecida. Percebeu-se a ausência de desdobramentos práticos para a implementação da PNSI LGBT por parte do poder público, uma dubiedade dos entrevistados em reconhecer discursos discriminatórios, ou mesmo a importância da identificação da orientação sexual e da identidade de gênero no acesso à saúde, o que acarreta a invisibilização das demandas LGBT. As narrativas apontaram para um atendimento aparentemente não discriminatório, embora reconheçam que o preconceito não atinge todos da mesma forma. Houve a percepção de que as pessoas LGBT são previamente identificadas pelos profissionais de saúde como portadores do vírus HIV, sendo um estigma infelizmente ainda persistente. Evidenciou-se nas narrativas conflitos éticos relacionados à garantia do direito à saúde; da igualdade no acesso e no atendimento; e da equidade, reconhecendo que a saúde deve ser ofertada na medida das necessidades das pessoas, respeitando sua diversidade. A PNSI LGBT foi percebida no que compete ao eixo do acesso à saúde, entretanto ela ainda necessita de estratégias que promovam desdobramentos práticos para sua plena implementação, capazes de promover e garantir o direito à saúde, rompendo a perspectiva equivocada de que a igualdade universal no acesso seria suficiente e sinônimo de equidade.

The Unified Health System (SUS) and its policies are governed by guiding principles, however, universal access is not a guarantee of meeting everyone's demands. Public policies aimed at LGBT were created to combat prejudice, discrimination and exclusion. In 2011, the National Policy on Comprehensive Health of LGBT (PNSI LGBT) was instituted, however, the lack of information about its implementation in Rio de Janeiro-RJ highlights the difficulties of serving this population. This Thesis aimed to analyze the implementation process and the ethical conflicts involved in the PNSI LGBT, in the city of Rio de Janeiro, through the perspective of access to health services. A systematic review of the literature and qualitative methodological approach was carried out through semi-structured interviews with managers, health professionals and LGBT users. The interviews were recorded and the data analyzed in a dialectic hermeneutic perspective. The literature review highlighted the specific demands of LGBT health, and the challenges that the PNSI LGBT faces for its full implementation, in addition to being still little explored. The narratives were grouped into four categories addressing bonding issues; perceptions regarding sexual orientation and gender identity; demands for comprehensive care for LGBT health; and ethical questions about justice, equality and equity in LGBT healthcare access. The interviews showed how managers, health professionals and users perceive access to health care for the LGBT population, and how little is known about the PNSI LGBT. It was noticed the absence of practical developments for the implementation of the PNSI LGBT by the public power, a dubiousness of the interviewees in recognizing discriminatory discourses, or even the importance of identifying sexual orientation and gender identity in access to health, which leads to the invisibility of LGBT demands. The narratives pointed to an apparently non-discriminatory service, although they recognize that prejudice does not affect everyone in the same way. There was a perception that LGBT people are previously identified by health professionals as having the HIV virus, which is unfortunately still a persistent stigma. It was evident in the narratives ethical conflicts related to the guarantee of the right to health; equality in access and care; and equity, recognizing that health should be offered according to people's needs, respecting their diversity. The PNSI LGBT was perceived in terms of the axis of access to health, however it still needs strategies that promote practical developments for its full implementation, capable of promoting and guaranteeing the right to health, breaking with the mistaken perspective that universal equality in the access would be sufficient and synonymous with equity.

El Sistema Único de Salud (SUS) y sus políticas se rigen por principios rectores, pero el acceso universal no es garantía de atender las demandas de todos. Las políticas públicas dirigidas a LGBT se crearon para combatir los prejuicios, la discriminación y la exclusión. En 2011, se instituyó la Política Nacional de Salud Integral de LGBT (PNSI LGBT) todavía, la falta de información sobre su implementación en Rio de Janeiro-RJ destaca las dificultades para atender a esta población. Esta Tesis tuvo como objetivo analizar el proceso de implementación y los conflictos éticos involucrados en la PNSI LGBT, en la ciudad de Rio de Janeiro, a través de la perspectiva del acceso a los servicios de salud. Se realizó una revisión sistemática de la literatura y enfoque metodológico cualitativo a través de entrevistas semiestructuradas a directivos, profesionales de la salud y usuarios LGBT. Las entrevistas fueron grabadas y los datos analizados en una perspectiva hermenéutica dialéctica. La revisión de la literatura destacó las demandas específicas de la salud LGBT y los desafíos que enfrenta la PNSI LGBT para su plena implementación, además de ser aún poco explorada. Las narraciones se agruparon en cuatro categorías que abordan cuestiones de vinculación; percepciones sobre orientación sexual e identidad de género; demandas de atención integral a la salud LGBT; y cuestiones éticas sobre la justicia, la igualdad y la equidad en el acceso a la salud LGBT. Las entrevistas mostraron cómo los gestores, profesionales de salud y usuarios perciben el acceso a la salud de la población LGBT, y lo poco que se sabe sobre la PNSI LGBT. Se percibió la ausencia de desarrollos prácticos para la implementación de la PNSI LGBT por parte del poder público, un recelo de los entrevistados en reconocer discursos discriminatorios, o incluso la importancia de identificar la orientación sexual y la identidad de género en el acceso a la salud, lo que conduce a la invisibilidad de las demandas LGBT. Las narrativas apuntaron a un servicio aparentemente no discriminatorio, aunque reconocen que los prejuicios no afectan a todos de la misma manera. Existía la percepción de que los profesionales de la salud identificaban previamente a las personas LGBT como portadoras del VIH, lo que sigue siendo un estigma persistente. Se evidenció en las narrativas conflictos éticos relacionados con la garantía del derecho a la salud; igualdad en el acceso y la atención; y equidad, reconociendo que la salud debe ser ofrecida de acuerdo a las necesidades de las personas, respetando su diversidad. La PNSI LGBT fue percibida en términos del eje del acceso a la salud, aunque necesita estrategias que promuevan desarrollos prácticos para su plena implementación, capaces de promover y garantizar el derecho a la salud, rompiendo con la perspectiva equivocada de que la igualdad universal en el acceso sería suficiente y sinónimo de equidad.

Local deliberative approach to the bioethical controversies: An opportunity for the proper implementation of neonatal screening / [Enfoque local deliberativo de las controversias bioéticas: una oportunidad para la adecuada implementación de la tamización neonatal].

Introduction: The controversial characteristics of neonatal screening influenced by bioethical considerations make its implementation complex. Colombia is not an exception in this sense and local circumstances complicate the panorama. Objective: To establish how bioethical controversies on neonatal screening are approached at a local level as a basis for deliberating on the must-be of this activity in Colombia. Materials and methods: A survey immersed in an interpretative investigation with descriptive and deliberative components of analysis was applied to approach the values exposed by officials of the Colombian Instituto Nacional de Salud. Results: The compulsory offer of screening by the nation, regardless of its opportunity cost and the consent for the use in research of results and residual samples, were not controversial, but, in contrast, the type of information and the consent to authorize screening did arise controversy. The more experienced officials preferred mandatory screening (17.7 vs. 11.79 years on average, p=0.007). Surprisingly, despite the risk of discrimination, keeping the neonate as the purpose, there was agreement on giving all the information to parents and medical records. Another controversial aspect was the follow-up of cases without hiding their identification where officials with more experience in bioethical aspects preferred the use of codes (4.5 vs. 1.26 years on average, p=0.009). In this context, strategies such as informed dissent, specialized advice or public health programs that appreciate diversity would allow to rescue even seemingly opposite values. Conclusion: A local approach regarding what ought to be in neonatal screening based on a deliberative bioethical perspective allowed to present an implementation proposal for this activity

Introducción. Las características controversiales de la tamización neonatal influenciadas por consideraciones bioéticas hacen compleja su implementación. Colombia no es ajena a esta situación y las circunstancias locales complican el panorama. Objetivo. Determinar cómo se abordan en el contexto local las controversias bioéticas en torno a la tamización neonatal como fundamento de las deliberaciones sobre el deber ser de esta actividad en Colombia. Materiales y métodos. Se aplicó una encuesta en el marco de un estudio interpretativo con dos componentes de análisis, uno descriptivo y otro deliberativo, en torno a los valores expuestos por funcionarios del Instituto Nacional de Salud. Resultados. La oferta obligatoria de la tamización por parte de la nación, independientemente del costo de oportunidad y el consentimiento para el uso de sus resultados y de las muestras residuales en la investigación, no suscitaron controversias, pero sí el tipo de información y la autorización para hacer la tamización. Los funcionarios con mayor experiencia expresaron su preferencia por una tamización obligatoria (17,7 Vs. 11,79 años en promedio; p=0,007). Sorpresivamente, a pesar del riesgo de discriminación, teniendo como fin el neonato, hubo acuerdo en entregar toda la información a padres e historia clínica. Otro aspecto controversial fue la identificación de los pacientes en el seguimiento, frente a lo cual los funcionarios de mayor experiencia en aspectos bioéticos prefirieron el uso de códigos (4,5 Vs. 1,26 años en promedio; p=0,009). En este contexto, estrategias como el disentimiento informado, el asesoramiento especializado o los programas de salud pública que aprecien la diversidad permitirían rescatar valores, incluso aquellos aparentemente opuestos. Conclusión. La aproximación local al deber ser de la tamización neonatal desde una perspectiva bioética deliberativa permitió ajustar una propuesta para su implementación.