ABSTRACT
Abstract: 15. The anonymity of gamete donors in the context of medically-assisted reproduction techniques (ART) and the right of the offspring to know their genetic or biological parents' identity is a controversial and widely debated topic in the scientific literature. The positions on the issue in each country are different. Sometimes they are in opposition to each other even in countries with strong similarities, such as those in the European Union (EU), in the framework of shared ethical values. Although some countries still enshrine the rule of anonymity, there is an undeniable tendency to guarantee the right to know one's origins by creating relevant exceptions or abolishing donor anonymity status altogether. 16. This article offers ethical and legal considerations of whether the so-called 'right to be forgotten' (RTBF) could be extended to include gamete donors' right to remain anonymous. This perspective goes against the general trend, certainly in Europe, of recognizing that offspring born from donor gametes have a right to access information relating to their genetic progenitors. The novel addition is to question whether the General Data Protection Regulation (GDPR) might provide fertile ground for questioning this approach, and effectively support those jurisdictions where anonymity is still possible.
Resumen: 20. El anonimato de los donantes de gametos en el contexto de las técnicas de reproducción médicamente asistida (RM) y el derecho de la descendencia a conocer su identidad genética o biológica es un tema controvertido y ampliamente debatido en la literatura científica. Las posiciones sobre el tema en cada país son diferentes. A veces se oponen entre sí, incluso en países con fuertes similitudes, como los de la Unión Europea (UE), en el marco de valores éticos compartidos. Aunque algunos países siguen consagrando la norma del anonimato, es innegable la tendencia a garantizar el derecho a conocer el propio origen creando las excepciones pertinentes o suprimiendo por completo el estatus de anonimato del donante. 21. Este artículo ofrece consideraciones éticas y jurídicas sobre si el llamado "derecho al olvido" podría ampliarse para incluir el derecho de los donantes de gametos a permanecer en el anonimato. Esta opinión es contraria a la tendencia general, ciertamente en Europa, de reconocer que los hijos nacidos de gametos donados tienen derecho a acceder a la información relativa a sus padres genéticos. La nueva adición consiste en debatir si el Reglamento general de protección de datos (RGPD) podría proporcionar un terreno fértil para cuestionar este enfoque y apoyar efectivamente a las jurisdicciones en las que el anonimato sigue siendo posible.
Resumo 25. O anonimato dos dadores de gâmetas no contexto das técnicas de reprodução medicamente assistida (RMA) e o direito da descendência a conhecer a sua identidade genética ou biológica é um tema controverso e amplamente debatido na literatura científica. As posições sobre a questão em cada país são diferentes. Por vezes estão em oposição umas às outras, mesmo em países com fortes semelhanças, como os da União Europeia (UE), no quadro de valores éticos partilhados. Embora alguns países ainda consagrem a regra do anonimato, existe uma tendência inegável para garantir o direito de conhecer as suas origens, criando exceções relevantes ou abolindo completamente o estatuto de anonimato dos dadores. 26. Este artigo oferece considerações éticas e legais sobre se o chamado "direito ao esquecimento" poderia ser alargado para incluir o direito dos dadores de gâmetas a permanecerem anónimos. Esta perspetiva vai contra a tendência geral, certamente na Europa, de reconhecer que os descendentes nascidos de gâmetas doadas têm o direito de aceder à informação relacionada com os seus progenitores genéticos. O novo aditamento é debater se o Regulamento Geral de Proteção de Dados (RGPD) poderá fornecer um terreno fértil para questionar esta abordagem, e apoiar efetivamente as jurisdições onde o anonimato ainda é possível.
Subject(s)
Humans , Confidentiality/ethics , Patient Rights , Directed Tissue Donation/ethics , Tissue Donors , Confidentiality/legislation & jurisprudence , Privacy , Disclosure/legislation & jurisprudence , Disclosure/ethics , Directed Tissue Donation/legislation & jurisprudence , Germ CellsABSTRACT
When prescribing a treatment, the physician should give truthful information about the likely benefits and the potential adverse effects, allowing the patient to make an autonomous decision about whether to take the treatment. However, the mere expectation of adverse effects may precipitate the corresponding symptoms. This is called "nocebo effect", which in contrast to the placebo effect, can lead to harm to the patient due to psychological factors. Nocebo effects are common and clinically significant, although often unnoticed. This situation generates conflicts in medical ethics guiding principles, namely the moral obligation to disclose all possible effects of the prescribed drug as opposed to the duty of avoiding the harm of side effects that are likely to occur in a case. In other words, the physician faces a dilemma between the due respect for autonomy and the duty of non-maleficence. This article reflects about this conflict, by exploring the limits of the principle of autonomy and how to balance it with the principle of non-maleficence. We suggest an interpretation of the principle of autonomy from a patient-centered perspective, suggesting that it is ethically sound to give a prudential, partial disclosure of information to the patient, for the sake of avoiding potential nocebo effects. The article concludes with some cautionary considerations to be considered about this decision.
Subject(s)
Humans , Disclosure/ethics , Ethical Analysis , Ethics, Medical , Nocebo Effect , Personal Autonomy , Moral Obligations , Decision Making/ethicsABSTRACT
Publishing scholarly articles in traditional and newly-launched journals is a responsible task, requiring diligence from authors, reviewers, editors, and publishers. The current generation of scientific authors has ample opportunities for publicizing their research. However, they have to selectively target journals and publish in compliance with the established norms of publishing ethics. Over the past few years, numerous illegitimate or predatory journals have emerged in most fields of science. By exploiting gold Open Access publishing, these journals paved the way for low-quality articles that threatened to change the landscape of evidence-based science. Authors, reviewers, editors, established publishers, and learned associations should be informed about predatory publishing practices and contribute to the trustworthiness of scholarly publications. In line with this, there have been several attempts to distinguish legitimate and illegitimate journals by blacklisting unethical journals (the Jeffrey Beall's list), issuing a statement on transparency and best publishing practices (the Open Access Scholarly Publishers Association's and other global organizations' draft document), and tightening the indexing criteria by the Directory of Open Access Journals. None of these measures alone turned to be sufficient. All stakeholders of science communication should be aware of multiple facets of unethical practices and publish well-checked and evidence-based articles.
Subject(s)
Communication , Disclosure/ethics , Ethics, Research , Fraud/ethics , Information Dissemination/ethics , Medical Writing , Periodicals as Topic/ethics , Publishing/ethics , Science/ethicsABSTRACT
Medical research should be fully transparent. The aims of this study were to determine the prevalence of author-related conflict of interest (COI) policies and evaluate the actual state of COI disclosure in Korean medical journals. To determine the prevalence of author-related COI policies, we examined the 198 medical journals listed in the KoreaMed database. To investigate the actual state of COI disclosures in published papers, we analyzed the publications in a representative medical journal, the Journal of the Korean Medical Science, from the perspective of the relevance of the ethics of COI disclosure. A total of 164 (82.8%) journals required an author's statement of COI as a criterion for publication. Of these 164, most of them focused on financial COI, with 101 (61.6%) presenting the information related to COI disclosures as a separate paragraph with a clear title. We identified 114 articles published by the Journal of the Korean Medical Science over a seven-year period, from January, 2006 to December, 2012. Of these, 65 papers (57%) included an author's statement of COI. We found that the policies of Korean medical journals regarding the disclosure of author COIs are still behind the internationally suggested level.
Subject(s)
Conflict of Interest , Disclosure/ethics , Editorial Policies , Periodicals as Topic/ethics , Publishing/ethics , Republic of KoreaABSTRACT
A gravidez é um momento importante para o diagnóstico do HIV, devido ao rastreamento de rotina das gestantes que são atendidas durante o pré-natal nos serviços de saúde, ou mesmo na ocasião do parto. O rastreio deve ser estendido ao parceiro sexual da gestante, caso ela seja soropositiva. A grande questão para o médico que lida com gestantes HIV positivo é saber como agir diante daquela paciente que omite ao seu parceiro sexual ser portadora do vírus. A presente revisão buscou embasamento ético e jurídico para tentar responder aos questionamentos dos profissionais, e orientá-los sobre a melhor conduta a adotar. De acordo com o que preceituam os artigos e resoluções do Código de Ética Médica e de outras instâncias jurídicas, apesar da paciente ter direito ao sigilo, o médico deve convencê-la a revelar sua condição de ser soropositiva ao seu parceiro sexual. Se a paciente se mostrar resistente a desvelar o status, o médico tem o dever de intervir e informar ao parceiro, para a proteção deste. A quebra de sigilo, nesse caso, é feita por justa causa, o que isenta o médico de problemas ou implicações legais.
The gestation period is an important time for detection of HIV due to the screening routinely performed in pregnant women who are attended at the health services during prenatal, or at delivery. The screening should be extended to her sexual partner, if the pregnant woman is seropositive. The big question for the physician who frequently attends pregnant HIV positive is to know how to deal with the HIV patient who omits her positive status to the sexual partner. The present review sought ethical and legal basement in order to answer the professionals' inquiries and to guide them about the best management to adopt. According to rules established in articles and resolutions of the Medical Ethics Code, and other juridical instances, despite patient has the right to secrecy, the doctor should convince her to reveal to the sexual partner that she is seropositive. If the patient shows resistance to reveal her status, the doctor has the duty to intervene and tell the partner in order to protect him. The breach of confidentiality, in this case, is made for just cause, which exempts the doctor of problems of legal implications.
Subject(s)
Humans , Male , Female , Pregnancy , HIV , HIV Seropositivity , Acquired Immunodeficiency Syndrome/transmission , Confidentiality , Duty to Warn , Ethics, Medical , Jurisprudence , Privacy , Disclosure/ethics , Disclosure/legislation & jurisprudence , Sexual Partners , Truth DisclosureABSTRACT
El autor comienza el trabajo con una reflexión desde su experiencia, en torno a los quiebres de la confidencialidad, fenómeno frecuente y dañino para el paciente y su entorno. Se señala que la literatura, conceptualiza la confidencialidad como un aspecto inherente y constitutivo del psicoanálisis. Una gran parte de los trabajos anteriores que tratan el tema, se centran en la búsqueda de la psicopatología del terapeuta que efectúa quiebres de la confidencialidad. Se plantea que independiente de la psicología del analista, se trata de una falla técnica que agrede el proceso terapéutico, menoscabando las condiciones necesarias para el progreso del tratamiento y alterando tanto la asociación libre como la atención flotante, esto es, independiente del daño que la infidencia en sí misma pudo producir.Además, se propone una clasificación de los distintos tipos de quiebres de confidencialidad, con el propósito de ordenar este complejo fenómeno
The author begins this paper with a self-reflection, from the perspective of his own experience about the breach of confidentiality, a phenomenon that is common and harmful for the patient and his environment. He points out that the literature conceptualizes confidentiality as an inherent and constitutive aspect of psychoanalysis. Previous papers about this issue had focused mainly on the psychopathology of the therapist who breaks the confidentiality. In this work the author argues that, besides the psychology of the analyst, it is a technical fault that attacks the therapeutic process, undermining the necessary conditions for treatment progress and altering both free association and floating attention, independently of the harm that the misfeasance in itself could produce. Finally, the author proposes a classification scheme of the different types of breaks in confidentiality, in order to organize this complex phenomenon
Subject(s)
Humans , Male , Female , Confidentiality/ethics , Psychoanalysis , Disclosure/ethics , Patients , Physician-Patient Relations , PrivacyABSTRACT
Esta dissertação tem por objetivo analisar sob a perspectiva do médico, o processo de comunicação de diagnósticos de câncer, identificando conflitos éticos que se apresentam, não apenas na fase de informação inicial, mas também no estabelecimento e condução do tratamento e na fase avançada da doença, como também identificar os problemas éticos relacionados à qualidade da comunicação de más notícias. Trata-se de uma pesquisa de abordagem qualitativa, que consistiu na realização de entrevistas semiestruturadas, analisadas a partir do método hermenêutico-dialético. Foram entrevistados quinze oncologistas, clínicos e cirurgiões, atuantes no município do Rio de Janeiro. A revelação do diagnóstico de câncer foi considerada pelos médicos uma difícil tarefa na prática oncológica, especialmente quando não há mais alternativas de tratamento curativo para oferecer ao paciente. As dificuldades estão relacionadas ao estigma da doença e às fantasias relacionadas ao seu conhecimento, à dificuldade do profissional em lidar com a morte, à carência de treinamento específico nos cursos de graduação, e se mostraram independentes do sexo e do período em que o médico concluiu sua graduação. Percebemos que na fase curativa, a necessidade do paciente conhecer o diagnóstico, para que assim possa colaborar com o médico no tratamento é decisiva para a revelação da verdade ao doente. Conflitos éticos foram identificados quando a família solicita que o diagnóstico ou o prognóstico da doença não seja revelado ao paciente. Identificamos forte influência da espiritualidade e da religiosidade nos médicos entrevistados, especialmente das religiões que atribuem um valor de sentido ao sofrimento e que defendem a idéia de continuidade da vida após a morte.
This thesis aim to examine the perspective of the physician in the communication process of cancer diagnoses, identifying ethical conflicts that arise, not only at the healing stage, but also in establishing and conducting the treatment and in advanced stages of disease, and also identify the ethical problems related to quality of communication of bad news. This is a qualitative study, which consisted of semistructured interviews, analyzed from the hermeneutic-dialectic method. We interviewed fifteen oncologists, clinicians and surgeons, working in Rio de Janeiro. Disclosure of cancer diagnosis was considered a difficult task for physicians in medical oncology, especially when no alternative curative treatment to offer the patient. The difficulties arerelated to stigma and the fantasies related to his knowledge, the difficulty of the professional in dealing with death, the lack of specific training in graduate courses, and were independent of sex and the period in which the doctor concluded graduation. We noticed that during healing stage, the patient's need to know the diagnosis, for to it cancollaborate with the medical treatment is crucial for revealing the truth to the patient. Ethical conflicts were identified as the family calls for the diagnosis or prognosis of the disease is not disclosed to the patient. We identified a strong influence of spirituality and religiosity in the doctors interviewed, especially religions that ascribe a meaning to the value of suffering and support the idea of continuity of life after death.
Subject(s)
Humans , Bioethics , Neoplasms/diagnosis , Palliative Care , Physician-Patient Relations/ethics , Disclosure/ethics , Patient Rights/ethics , Professional Autonomy , Prognosis , ReligionABSTRACT
Esta dissertação tem por objetivo analisar sob a perspectiva do médico, o processo de comunicação de diagnósticos de câncer, identificando conflitos éticos que se apresentam, não apenas na fase de informação inicial, mas também no estabelecimento e condução do tratamento e na fase avançada da doença, como também identificar os problemas éticos relacionados à qualidade da comunicação de más notícias. Trata-se de uma pesquisa de abordagem qualitativa, que consistiu na realização de entrevistas semiestruturadas, analisadas a partir do método hermenêutico-dialético. Foram entrevistados quinze oncologistas, clínicos e cirurgiões, atuantes no município do Rio de Janeiro. A revelação do diagnóstico de câncer foi considerada pelos médicos uma difícil tarefa na prática oncológica, especialmente quando não há mais alternativas de tratamento curativo para oferecer ao paciente. As dificuldades estão relacionadas ao estigma dadoença e às fantasias relacionadas ao seu conhecimento, à dificuldade do profissional em lidar com a morte, à carência de treinamento específico nos cursos de graduação, e se mostraram independentes do sexo e do período em que o médico concluiu sua graduação. Percebemos que na fase curativa, a necessidade do paciente conhecer o diagnóstico, para que assim possa colaborar com o médico no tratamento é decisiva para a revelação da verdade ao doente. Conflitos éticos foram identificados quando a família solicita que o diagnóstico ou o prognóstico da doença não seja revelado ao paciente. Identificamos forte influência da espiritualidade e da religiosidade nos médicos entrevistados, especialmente das religiões que atribuem um valor de sentido ao sofrimento e que defendem a idéia de continuidade da vida após a morte.
This thesis aim to examine the perspective of the physician in the communication process of cancer diagnoses, identifying ethical conflicts that arise, not only at the healing stage, but also in establishing and conducting the treatment and in advanced stages of disease, and also identify the ethical problems related to quality ofcommunication of bad news. This is a qualitative study, which consisted of semistructured interviews, analyzed from the hermeneutic-dialectic method. We interviewed fifteen oncologists, clinicians and surgeons, working in Rio de Janeiro. Disclosure of cancer diagnosis was considered a difficult task for physicians in medical oncology, especially when no alternative curative treatment to offer the patient. The difficulties arerelated to stigma and the fantasies related to his knowledge, the difficulty of the professional in dealing with death, the lack of specific training in graduate courses, and were independent of sex and the period in which the doctor concluded graduation. We noticed that during healing stage, the patient's need to know the diagnosis, for to it cancollaborate with the medical treatment is crucial for revealing the truth to the patient. Ethical conflicts were identified as the family calls for the diagnosis or prognosis of the disease is not disclosed to the patient. We identified a strong influence of spirituality and religiosity in the doctors interviewed, especially religions that ascribe a meaning to the value of suffering and support the idea of continuity of life after death.