[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.

Qualitative Focus Groups with Professionals of Special Education and Parents of Young Females with Intellectual Disability Exploring Experiences with Menstrual Hygiene Management and the Trigger for the Non-Therapeutic Hysterectomy in Mexico.

How primary carers, physicians, health education professionals, and others see or understand the subject of menstruation in women with intellectual disability (ID) is rooted in the socio-cultural context and in the socio-economic structures in which all of them live. The aim of this study was to explore how parents of young females with ID and special education professionals perceive and experience menstrual hygiene management, which coping strategies are applied; and what triggers the performance of a hysterectomy. A qualitative focus group study design was conducted with 69 parents and 11 special education professionals, in 14 schools and one Down syndrome clinic, in Mexico City. Data were analysed using the method of thematic analysis. The main concern of parents was how to cope with the underlying disease. They perceived menstrual bleeding positively. Their psychological distress had to do with the reproductive health of their daughters, with their wish to avoid pregnancy, and with their fear of death and leaving their daughters alone and helpless without them. None of them favoured hysterectomy. Medical indication of hysterectomy was identified as the trigger for its performance. There is an urgent need of policy development/review on best practices for hysterectomy in the females in question.

Donor notification of permanent deferral: a qualitative study on the perceptions and practices of notifier and blood donor in Mexico.

BACKGROUND: Informing about permanent deferral requires a process that links the notifier with the donor in a particular way. Little is known about the type of information and how it is disclosed to the donors. The current study aimed to examine perceptions and practices of notifier and blood donor within the framework of the notification process of permanent deferral and from the perspective of the notifier-blood donor relationship. METHODS: A qualitative study with in-depth interviews. The participants were 13 notifiers and 25 permanently deferred donors. Participants were recruited from a national blood bank and a state's blood bank. The entire dataset/narratives were analysed using the method of thematic analysis. RESULTS: The disclosure of permanent deferral was understood as a matter of disclosing the serological test results and their medical meaning along with a concise explanation of the deferral status with regard to future blood donation and the plan to be followed. The notifiers preferred to act in accordance with the standard protocol despite acknowledging the adverse psychological and social effects to which donors are exposed when they are informed of the possible disease and the consequent permanent deferral. Donors described a variety of psychological and social affectations. They valued honesty in the communication, the clarity of the information provided and a greater involvement of the notifier. CONCLUSION: Even though the notification process does not imply that medical care is being offered to donors, the notifier is the administrator of the well-being of the donor. Notification must not be considered as something apart from care, since it is intimately related to the health of each of the donors and their medical care.

Clinical, Epidemiologic and Ethical Aspects of Hysterectomy in Young Females With Intellectual Disability: A Multi-Centre Study of Public Hospitals in Mexico City.

Background: Non-therapeutic hysterectomy has been performed to this day in Mexican women with intellectual disabilities (IDs), but the rationale for performing the procedure has been rarely submitted to clinical ethics committees. The objectives of the present research were to determine the frequency of hysterectomy and the clinical and epidemiologic characteristics that associated to the indication of hysterectomy in girls and young females with IDs and to analyse the emerging ethical issues related to the procedure. Materials and Methods: A medical chart review was conducted to identify female patients aged ≤ 25 years who had IDs based on anatomical pathologies and hospital records and underwent hysterectomy between January 2014 and December 2019 in nine high-concentration hospitals in Mexico City. Data were collected using a questionnaire developed ex professo and validated through a pilot study and analysed using the Statistical Package for the Social Sciences (SPSS) 21.0 software. Results: Information of 234 female patients with or without ID who were ≤ 25 years of age was reported by the departments of anatomical pathology and paediatrics. Of the patients, 184 (79%) were excluded because the information reported was found to be erroneous or incomplete during the medical records review. Most of the 50 emales included in the study had moderate ID (n = 23, 46%) followed by those with severe ID (n = 17, 34%). The mean age at hysterectomy was 15 ± 2.9 years. Prophylactic-total abdominal hysterectomy was the most frequently performed (n = 42, 84%). A concurrence was observed between the parental and medical reasons justifying hysterectomy. The most frequent reasons were fertility control (parents vs. physicians: 46 vs. 42%), management of menstrual hygiene (28 vs. 30%) and risk of sexual abuse (6 vs. 6%). Conclusion: This study showed that performing non-therapeutic hysterectomy is subject to the clinical judgement of physicians according to their perception of the patient's quality of life. Therefore, the ethical quality of the decision to perform the procedure in girls and young females resides in the ethical value of its consequences.

Informed consent: its importance for retrolective research and medical science progress.

In retrolective research, the information necessary to answer the research question is directly generated from medical records and other clinical-documentary sources. This article analyzes the waiver of informed consent and privacy notice when research is retrolective, from which two lines of argument emerge: one is the physician's duty to protect patient dignity, integrity, right to self-determination and privacy, as well as the confidentiality of the information obtained from him; the other is retrolective research contribution to the control of diseases and society's health improvement. Waiver of informed consent or privacy notice documented in the medical record is important for retrolective research, but it has ethical implications for researchers who do not comply with the rationality and personal responsibility they have before society.

En la investigación retrolectiva, la información necesaria para responder la pregunta de investigación se genera directamente de expedientes clínicos y de otras fuentes clínico-documentales. Este artículo analiza la dispensa del consentimiento informado y el aviso de privacidad cuando la investigación es retrolectiva, de lo cual emergen dos líneas de argumentación: una es el deber del médico de proteger la dignidad, la integridad, el derecho a la autodeterminación, la intimidad del enfermo y la confidencialidad de la información obtenida de él; la otra es la contribución de las investigaciones retrolectivas al control de las enfermedades y a la mejora de la salud de la sociedad. La dispensa del consentimiento o el aviso de privacidad en el expediente clínico es importante para la investigación retrolectiva, pero tiene implicaciones éticas para los investigadores que no cumplan con la racionalidad y responsabilidad personal que tienen ante la sociedad.

El consentimiento informado: su importancia para la investigación retrolectiva y el progreso de la ciencia médica / Informed consent: its importance for retrolective research and medical science progress

Resumen En la investigación retrolectiva, la información necesaria para responder la pregunta de investigación se genera directamente de expedientes clínicos y de otras fuentes clínico-documentales. Este artículo analiza la dispensa del consentimiento informado y el aviso de privacidad cuando la investigación es retrolectiva, de lo cual emergen dos líneas de argumentación: una es el deber del médico de proteger la dignidad, la integridad, el derecho a la autodeterminación, la intimidad del enfermo y la confidencialidad de la información obtenida de él; la otra es la contribución de las investigaciones retrolectivas al control de las enfermedades y a la mejora de la salud de la sociedad. La dispensa del consentimiento o el aviso de privacidad en el expediente clínico es importante para la investigación retrolectiva, pero tiene implicaciones éticas para los investigadores que no cumplan con la racionalidad y responsabilidad personal que tienen ante la sociedad.

Abstract In retrolective research, the information necessary to answer the research question is directly generated from medical records and other clinical-documentary sources. This article analyzes the waiver of informed consent and privacy notice when research is retrolective, from which two lines of argument emerge: one is the physician’s duty to protect patient dignity, integrity, right to self-determination and privacy, as well as the confidentiality of the information obtained from him; the other is retrolective research contribution to the control of diseases and society’s health improvement. Waiver of informed consent or privacy notice documented in the medical record is important for retrolective research, but it has ethical implications for researchers who do not comply with the rationality and personal responsibility they have before society.

Research and research ethics committees and the obligation for them to operate in accordance with the principle of the social covenant.

The relationship between the social covenant, ethics and scientific research is highly important for society. Economic prosperity and better health are two of the main reasons why society supports science, without society itself being able to determine the nature of the research that is to be implemented; this is decided by Research Committees (RCs) and Research Ethics Committees (RECs). This article analyzes how the work of RCs and RECs must have a social covenant and represent the interests of society in order to promote its trust in research.

La relación entre alianza social, ética e investigación científica es extremadamente importante para la sociedad. La prosperidad económica y la mejor salud son dos de las principales razones por las cuales la sociedad apoya a la ciencia, sin que la sociedad misma pueda determinar la naturaleza de las investigaciones que serán implementadas; esto último lo deciden los comités de investigación (CI) y los comités de ética en investigación (CEI). En este artículo se analiza cómo el trabajo de los CI y CEI debe tener una alianza social y representar los intereses de la sociedad para promover la confianza de esta en la investigación.

Los comités de investigación y ética en investigación y la obligación de que operen de acuerdo con el principio de la alianza social / Research and research ethics committees and the obligation for them to operate in accordance with the principle of the social covenant

Resumen La relación entre alianza social, ética e investigación científica es extremadamente importante para la sociedad. La prosperidad económica y la mejor salud son dos de las principales razones por las cuales la sociedad apoya a la ciencia, sin que la sociedad misma pueda determinar la naturaleza de las investigaciones que serán implementadas; esto último lo deciden los comités de investigación (CI) y los comités de ética en investigación (CEI). En este artículo se analiza cómo el trabajo de los CI y CEI debe tener una alianza social y representar los intereses de la sociedad para promover la confianza de esta en la investigación.

Abstract The relationship between the social covenant, ethics and scientific research is highly important for society. Economic prosperity and better health are two of the main reasons why society supports science, without society itself being able to determine the nature of the research that is to be implemented; this is decided by Research Committees (RCs) and Research Ethics Committees (RECs). This article analyzes how the work of RCs and RECs must have a social covenant and represent the interests of society in order to promote its trust in research.

Los comités de investigación en salud: su autoridad, responsabilidad fundamental y necesidad de que se sometan a auditorías periódicas.

Research ethics must include theoretical and practical dimensions. The first one is structured by regulations and policies, and the second dimension refers to how the committee interprets and applies those regulations and policies. This article analyses the operation of the committees at a practical level. Given that the evaluation and judgement of research protocols is a process that requires full awareness, its omission entails important implications for health research.

La ética de la investigación debe incluir las dimensiones teórica y práctica. La primera la conforman regulaciones y directrices y la segunda alude a la forma cómo los comités de ética y ética de la investigación interpretan y aplican esas regulaciones y directrices. En este artículo se analiza la operación de los comités a nivel práctico. Dado que la evaluación y el dictamen de los protocolos de investigación es un proceso que requiere consciencia plena, la omisión de esta conlleva importantes implicaciones para la investigación en salud.

Los comités de investigación en salud: su autoridad, responsabilidad fundamental y necesidad de que se sometan a auditorías periódicas / Health research committees: their authority, fundamental responsibility and the need for them to undergo periodic audits

Resumen La ética de la investigación debe incluir las dimensiones teórica y práctica. La primera la conforman regulaciones y directrices y la segunda alude a la forma cómo los comités de ética y ética de la investigación interpretan y aplican esas regulaciones y directrices. En este artículo se analiza la operación de los comités a nivel práctico. Dado que la evaluación y el dictamen de los protocolos de investigación es un proceso que requiere consciencia plena, la omisión de esta conlleva importantes implicaciones para la investigación en salud.

Abstract Research ethics must include theoretical and practical dimensions. The first one is structured by regulations and policies, and the second dimension refers to how the committee interprets and applies those regulations and policies. This article analyses the operation of the committees at a practical level. Given that the evaluation and judgement of research protocols is a process that requires full awareness, its omission entails important implications for health research.

[Legitimidad de la histerectomía para resolver el "problema" de la higiene menstrual en adolescentes con discapacidad intelectual].

Menstrual hygiene in adolescents with intellectual disability (ID) represents an extra burden for parents or primary caregivers, especially in developing countries, where social institutions, including the health system, lack the capability to help this group of teenagers and their families; hence, hysterectomy to eliminate menstrual bleeding is considered a morally acceptable resource. Hysterectomy to solve the "problem" of menstrual hygiene reflects obstacles that affect the care provided by the physician to the adolescent with ID: on one hand, the criterion of social value about a "poor quality of life," and on the other, discrimination when only socioeconomic conditions are considered rather than the lack of a social network of support and special education. In Mexico, current medical support for girls and adolescents with ID for the management of menstrual hygiene is unsatisfactory. The practice of hysterectomy with the single purpose of menstrual hygiene is ethically and morally unfair and maleficent.

La higiene menstrual en las adolescentes con discapacidad intelectual (DI) representa una carga extra para los padres o cuidadores primarios, principalmente en países en desarrollo, donde las instituciones sociales, incluyendo el sistema sanitario, no tienen la capacidad suficiente para ayudar a este grupo de adolescentes y sus familias; de ahí que la histerectomía para eliminar el sagrado menstrual sea considerada como un recurso éticamente aceptable. La histerectomía para resolver el "problema" de la higiene menstrual refleja óbices que afectan la atención que el médico otorga a la adolescente con DI: por un lado, el criterio de valía social sobre una "calidad de vida deficiente" y, por otro, la discriminación, al considerar solo las condiciones socioeconómicas y no la falta de una red social de apoyo y de educación especial. En México, la actual asistencia médica a las niñas y adolescentes con DI para el manejo de la higiene menstrual es insatisfactoria. La práctica de la histerectomía por el solo hecho de higiene menstrual resulta ser ética y moralmente injusta y maleficente.

Hysterectomy for the Management of Menstrual Hygiene in Women With Intellectual Disability. A Systematic Review Focusing on Standards and Ethical Considerations for Developing Countries.

Background: Menstruation poses particular challenges for women with intellectual disability (ID). In low-and middle-income countries, where these women do not have access to facilities and resources for adequate menstrual care, hysterectomy could be considered as an ethically acceptable procedure. We conducted the first systematic review to identify what constitutes best practice for menstrual hygiene in women with ID and explored the perspectives of actors involved in the hysterectomy decision. Methods: Theory-informed mixed-method thematic systematic review with theory development. Results: Eleven ethical guidelines and 17 studies were included. Respect for autonomy and the patient's best interest were the criteria to determine what constitutes best practice. The actors' values and attitudes expressed some dimensions of existing inequities. In low-and middle-income countries, the main concern of parents was the difficulty to train their daughters about menstrual hygiene. Parents (mothers in particular) also expressed the feeling of being excessively burdened, and complained about the limitations of their support networks. Doctors perceived hysterectomy as a safe procedure and a solution for women with ID, whose menstrual hygiene is problematic. In general, the more severe or profound the level of ID, the more likely the interested parties advocated for a hysterectomy. The women with ID perceived their menstruation as a negative experience. Hence, the three parties supported hysterectomy for menstrual hygiene. Parents and doctors considered informed consent or assent (from the women with ID) as necessary and achievable. Conclusion: The international ethical guidelines suggest that non-therapeutic hysterectomy in women with ID should not and ought not to be recommended as routine and appropriate method to cope with menstrual hygiene even if it is technically safe. Although hysterectomy to cope with menstrual hygiene is still a live issue in high-, middle-, and low-income countries, in high income countries it is performed with authorization from the Court; whilst in low-and middle-income countries there is not an active involvement of the State, or financial or training support for women with ID and their carers. Hence, in low-and middle-income countries there is an urgent need to develop and enact policies and statutes in this area of public health and clinical practice.

Mortality of young people with cancer: clinical-epidemiological characteristics of death and emerging ethical aspects / La mortalidad en adolescentes con cáncer: características clinicoepidemiológicas de muerte y aspectos éticos emergentes.

Objective: To describe the epidemiological, clinical, and ethical aspects of the mortality of young people with cancer in Mexico. Methods: 63 medical records from 14 to 18-year-old patients, with cancer, who died between 2011 and 2014, were reviewed to obtain epidemiological and clinical characteristics of their death. The study sites were three tertiary referral hospitals in Mexico City. Results: Of 40 young people in terminal phase, 16 (40%) continued to receive curative treatment; of the 51 whose place of death was known, 45 (88%) died in hospital. Of the 41 who died within 30 days of their last hospitalization, deaths were due to complications (51%), progression of the disease (41%), and deaths of those in palliative care (7%). Conclusions: Oncological practice rests on what is known as a biomedical model. The results of this study suggest the urgent need for, and support the implementation of, true palliative-care services. More importantly, these findings underscore the necessity of putting the ethics of clinical practice into action, such that best practice in medicine is reinforced.

Objetivo: Describir los aspectos epidemiológicos, clínicos y éticos de la mortalidad de los adolescentes con cáncer en México. Métodos: Se revisaron 63 expedientes clínicos de adolescentes (de 14 a 18 años de edad) con cáncer, fallecidos entre 2011 y 2014, para obtener información clínica y epidemiológica de su muerte. Los sitios de estudio fueron tres hospitales de concentración en la Ciudad de México. Resultados: De los 40 adolescentes con criterios de fase terminal, 16 (40%) continuaron recibiendo tratamiento con fines curativos. De los 51 cuyo lugar de muerte era conocido, 45 (88%) murieron en hospital. De los 41 que murieron dentro de los 30 días de su última hospitalización, las muertes fueron principalmente debidas a complicaciones (51%), a progresión de la enfermedad (41%) o bien fueron muertes en tratamiento paliativo (7%, 3/41). Conclusiones: La práctica oncológica descansa en lo que es conocido como modelo biomédico. Los resultados del estudio sugieren y apoyan la urgente necesidad de implementar verdaderos servicios de cuidados paliativos, pero más importante que eso, está el ímpetu de poner la ética de la práctica clínica en acción, y de ese modo reforzar la buena práctica de la medicina.

Decision-making on therapeutic futility in Mexican adolescents with cancer: a qualitative study.

BACKGROUND: The world literature shows that empirical research regarding the process of decision-making when cancer in adolescents is no longer curable has been conducted in High-income, English speaking countries. The objective of the current study was to explore in-depth and to explain the decision-making process from the perspective of Mexican oncologists, parents, and affected adolescents and to identify the ethical principles that guide such decision-making. METHODS: Purposive, qualitative design based on individual, fact-to-face, semi-structured, in-depth interviews. The participants were thirteen paediatric oncologists, 13 parents or primary carers, and six adolescents with incurable cancer. The participants were recruited from the paediatric oncology services of three national tertiary-care medical centres in Mexico City. RESULTS: The oncologists stated that they broach the subject of palliative management when they have determined that curative treatment has failed. Respect for autonomy was understood as the assent of the parent/adolescent to what the oncologist determined to be in the best interest of the adolescent. The oncologists thought that the adolescent should be involved in the decision-making. They also identified the ability to count on a palliative care clinic or service as an urgent need. For the parents, it was essential that the oncologist be truly interested in their adolescent child. The parents did not consider it necessary to inform the child about impending death. The adolescents stated that the honesty of their oncologists was important; however, several of them opted for a passive role in the decision-making process. CONCLUSION: The findings of this study evidence that to achieve good medical practice in low-middle income countries, like Mexico, it is urgent to begin effective implementation of palliative care, together with appropriate training and continuing education in the ethics of clinical practice.

[Controversy in the treatment of a critically ill neonate in a rural health service]. / Controversias sobre el tratamiento de un neonato críticamente enfermo en un servicio de salud rural.

Cardiopulmonary resuscitation of newborns with perinatal hypoxia faces serious ethical, moral, medical and legal problems, particularly in rural areas. Ethical and moral issues have to do with the medical-parents relationship; with values, preferences and priorities of each of these groups; and with the scarce resources situation. Medical-technical problems are related to asphyxia complications, and their prognostic and therapeutic implications. Legal considerations arising from the fact of killing or letting die. In this article is analyzed the real case of a neonate with severe perinatal hypoxia in order to enhance the understanding of the incorporation of ethics in everyday clinical practice.

La reanimación cardiopulmonar de recién nacidos con hipoxia perinatal grave enfrenta problemas éticos, morales, médicos y legales, particularmente en áreas rurales. Los problemas éticos y morales tienen que ver con la relación médico-padres; con los valores, preferencias y prioridades de cada uno de estos grupos, y con la situación de la escasez de recursos. Los problemas técnico-médicos están relacionados con las complicaciones relacionadas a la asfixia, así como con sus implicaciones pronósticas y terapéuticas. Mientras que las consideraciones legales derivan del hecho de matar o dejar morir. En este artículo se discute el caso real de un neonato con asfixia perinatal grave con el propósito de fortalecer el entendimiento de la incorporación de la ética de la práctica clínica cotidiana.

[Ethics committees in the experience of the IMSS: a Latin American instance]. / Los comités de ética en la experiencia del IMSS: una instancia en Latinoamérica.

BACKGROUND: The aim of this article is to identify the current state of hospital bioethics committees and local research ethics committees of the Mexican Institute of Social Security (IMSS). METHODS: A descriptive cross-sectional study was performed that included all hospitals of the IMSS (N = 262). Two self-administered questionnaires were e-mailed between october and november 2014 to the hospital directors: one for hospital bioethics committees and another for local research ethics committees. Both questionnaires had five sections: committee location, date of committee set up, activity situation, composition, functions, and experience. RESULTS: The response rate was 85 %. It was reported 150 active hospital bioethics committees and 67 active local research ethics committees. In both groups physicians and executive directors dominated committees' membership, and lay people were reported only in seven hospital bioethics committees. The primary function of hospital bioethics committees was case consultation, and their primary goal "to improve the quality of medical care". Local Research Ethics Committees reported as primary function "to evaluate health research protocols and rule of them", and as their primary goal "to protect the rights and wellbeing of the research subjects". CONCLUSIONS: Both groups of committees ought to be assessed regularly through audit cycles in order to identify the educative actions that enhance their efficiency.

Introducción: el objetivo es examinar la situación actual de los comités hospitalarios de bioética (CHB) y de los comités locales de investigación y ética en investigación en salud (CLIEIS) del Instituto Mexicano del Seguro Social (IMSS). Métodos: estudio cuantitativo, transversal descriptivo, realizado entre octubre y noviembre de 2014. Se enviaron por correo electrónico dos cuestionarios, autoadministrados o de autorreporte, a todos los hospitales del IMSS (N = 262): uno para los CHB y otro para los CLIEIS. Cinco apartados contenían ambos cuestionarios: localización del comité, fecha en la que fue constituido, estado actual de actividad, composición, funciones y experiencia. Resultados: la tasa de respuesta fue de 85 %. Se identificaron 150 CHB activos y 67 CLIEIS activos. En ambos grupos predominó la profesión médica y el personal directivo entre sus integrantes. Los representantes de la ciudadanía sólo fueron reportados en siete CHB. La función primaria reportada por los CHB fue la consultiva, y su meta primaria: "mejorar la calidad de la atención médica". Los CLIEIS señalaron como función primaria: "evaluar y dictaminar protocolos de investigación en salud" y dentro de sus metas el "proteger los derechos y el bienestar de los sujetos de investigación". Conclusiones: ambos grupos de comités debieran ser evaluados regularmente a través de ciclos de auditoría con el propósito de identificar las acciones educativas que promuevan su eficiencia.

When to stop? Decision-making when children's cancer treatment is no longer curative: a mixed-method systematic review.

BACKGROUND: Children with cancer, parents, and clinicians, face difficult decisions when cure is no longer possible. Little is known about decision-making processes, how agreement is reached, or perspectives of different actors. Professionals voice concerns about managing parental expectations and beliefs, which can be contrary to their own and may change over time. We conducted the first systematic review to determine what constitutes best medico-legal practice for children under 19 years as context to exploring the perspectives of actors who make judgements and decisions when cancer treatment is no longer curative. METHODS: Theory-informed mixed-method thematic systematic review with theory development. RESULTS: Eight legal/ethical guidelines and 18 studies were included. Whilst there were no unresolved dilemmas, actors had different perspectives and motives. In line with guidelines, the best interests of the individual child informed decisions, although how different actors conceptualized 'best interests' when treatment was no longer curative varied. Respect for autonomy was understood as following child/parent preferences, which varied from case to case. Doctors generally shared information so that parents alone could make an informed decision. When parents received reliable information, and personalized interest in their child, they were more likely to achieve shared trust and clearer transition to palliation. Although under-represented in research studies, young people's perspectives showed some differences to those of parents and professionals. For example, young people preferred to be informed even when prognosis was poor, and they had an altruistic desire to help others by participating in research. CONCLUSION: There needs to be fresh impetus to more effectively and universally implement the ethics of professionalism into daily clinical practice in order to reinforce humanitarian attitudes. Ethical guidelines and regulations attempt to bring professionals together by articulating shared values. While important, ethics training must be supported by institutions/organizations to assist doctors to maintain good professional standards. Findings will hopefully stimulate further normative and descriptive lines of research in this complex under-researched field. Future research needs to be undertaken through a more deliberative cultural lens that includes children's and multi-disciplinary team members' perspectives to more fully characterize and understand the dynamics of the decision-making process in this specific end-of life context.

Ethical issues relating to renal transplantation from prediabetic living donor.

BACKGROUND: In Mexico, diabetes mellitus is the main cause of end - stage kidney disease, and some patients may be transplant candidates. Organ supply is limited because of cultural issues. And, there is a lack of standardized clinical guidelines regarding organ donation. These issues highlight the tension surrounding the fact that living donors are being selected despite being prediabetic. This article presents, examines and discusses using the principles of non-maleficience, autonomy, justice and the constitutionally guaranteed right to health, the ethical considerations that arise from considering a prediabetic person as a potential kidney donor. DISCUSSION: Diabetes is an absolute contraindication for donating a kidney. However, the transplant protocols most frequently used in Mexico do not consider prediabetes as exclusion criteria. In prediabetic persons there are well known metabolic alterations that may compromise the long - term outcomes of the transplant if such donors are accepted. Even so, many of them are finally included because there are not enough donor candidates. Both, families and hospitals face the need to rapidly accept prediabetic donors before the clinical conditions of the recipient and the evolution of the disease exclude him/her as a transplant candidate; however, when using a kidney potentially damaged by prediabetes, neither the donor's nor the recipient's long term health is usually considered.Considering the ethical implication as well as the clinical and epidemiological evidence, we conclude that prediabetic persons are not suitable candidates for kidney donation. This recommendation should be taken into consideration by Mexican health institutions who should rewrite their transplant protocols. SUMMARY: We argue that the decision to use a kidney from a living donor known to be pre-diabetic or from those persons with family history of T2DM, obesity, hypertension, or renal failure, should be considered unethical in Mexico if the donor bases the decision to donate on socially acceptable norms rather than informed consent as understood in modern medicine.

[Physician-patient with AIDS-relationship, as a model of clinical relation within the framework of the social security institutions in Mexico]. / Análisis de la naturaleza de la relación médico-enfermo con SIDA en instituciones de seguridad social en México.

OBJECTIVE: To examine the nature and level of physician involvement during a clinical encounter with a patient with a chronic condition, such as AIDS, and to explore how it is understood and constructed by them. MATERIAL AND METHODS: Qualitative design with participant observation and semi-structured interviews, with physicians and patients, conducted in hospitals of Social Security Institutions in Mexico City Data were analyzed using the constant comparative method developed in the grounded theory tradition. The emergent themes studied were the dynamics of the encounters, levels of participation of the physician, and attitudes of both participants. RESULTS: Irrespective of whether patients were seen for the first time, or subsequently, in outpatient consultation or in hospital, the physician focused on the solution of the biological problem and on the performance of a work commitment with the Institution. CONCLUSION: This study highlights the need to strengthen the incorporation of the ethics into daily clinical practice in order to transform a physician-patient relationship which is merely bureaucratic, focused on the solution of a biological problem and on the fulfillment of an institutional commitment, into a relationship which is truly professional and at the service of the patient.

Ethical issues relating the the banking of umbilical cord blood in Mexico.

BACKGROUND: Umbilical cord banks are a central component, as umbilical cord tissue providers, in both medical treatment and scientific research with stem cells. But, whereas the creation of umbilical cord banks is seen as successful practice, it is perceived as a risky style of play by others. This article examines and discusses the ethical, medical and legal considerations that arise from the operation of umbilical cord banks in Mexico. DISCUSSION: A number of experts have stated that the use of umbilical cord goes beyond the mere utilization of human tissues for the purpose of treatment. This tissue is also used in research studies: genetic studies, studies to evaluate the effectiveness of new antibiotics, studies to identify new proteins, etc. Meanwhile, others claim that the law and other norms for the functioning of cord banks are not consistent and are poorly defined. Some of these critics point out that the confidentiality of donor information is handled differently in different places. The fact that private cord banks offer their services as "biological insurance" in order to obtain informed consent by promising the parents that the tissue that will be stored insures the health of their child in the future raises the issue of whether the consent is freely given or given under coercion. Another consideration that must be made in relation to privately owned cord banks has to do with the ownership of the stored umbilical cord. SUMMARY: Conflicts between moral principles and economic interests (non-moral principles) cause dilemmas in the clinical practice of umbilical cord blood storage and use especially in privately owned banks. This article presents a reflection and some of the guidelines that must be followed by umbilical cord banks in order to deal with these conflicts. This reflection is based on the fundamental notions of ethics and public health and seeks to be a contribution towards the improvement of umbilical cord banks' performance.