Informe del Comité de Bioética de España sobre aspectos del uso secundario de los datos y el espacio europeo de protección de datos / [Report of the Spanish Bioethics Committee on aspects of secondary use of data and the European data protection space]

El presente informe da respuesta a la consulta de la Secretaría de Estado de Sanidad del Ministerio de Sanidad de 26 de mayo de 2023 sobre algunos aspectos del uso secundario de los datos y el espacio europeo de protección de datos. Recibida la consulta, el Comité aprobó el siguiente informe en su reunión plenaria del día 7 de noviembre de 2023, conforme a lo dispuesto en el artículo 78.1 a) de la Ley 14/2007, de 3 de julio, de Investigación Biomédica, que fija entre las funciones del Comité emitir informes, propuestas y recomendaciones para los poderes públicos de ámbito estatal y autonómico en asuntos con implicaciones bioéticas relevantes. (AU)

How Should Ethics Consultants Weigh the Law (and other Authoritative Directives)?

In the continuing debate about the role of the Clinical Ethics Consultant in performing clinical ethics consultations, it is often assumed that consultants should operate within ethical and legal standards. Recent scholarship has focused primarily on clarifying the consultant's role with respect to the ethical standards that serve as parameters of consulting. In the following, however, I wish to address the question of how the ethics consultant should weigh legal standards and, more broadly, how consultants might weigh authoritative directives, whether legal, institutional, or professional, against other normative considerations. I argue that consultants should reject the view that authoritative directives carry exclusionary reason for actions and, further, ethicists should interpret directives as lacking any moral weight qua authoritative directive. I then identify both implications and limitations of this view with respect to the evolving role of the ethics consultant in an institutional setting, and in doing so propose the kinds of considerations the ethicist should weigh when presented with an authoritative directive.

El mejor interés del niño en neonatología: ¿es lo mejor para el niño? / The best interest of the child in neonatology: Is it best for the child?

Desde sus inicios, el estándar del mejor interés del niño estuvo unido a las decisiones de suspensión de tratamientos de soporte vital en unidades de neonatología y a la evaluación de los tratamientos aplicados al niño en función de su calidad de vida. Éste origen ha condicionado la interpretación del estándar desde dos extremos: uno vitalista y uno no vitalista que ha triunfado en la bioética occidental y ha llevado a la consagración del estándar del mejor interés del niño en la Convención de Derechos del Niño de Naciones Unidas. Un análisis detallado nos descubre un estándar simplista, utilitarista y proporcionalista, que ha cambiado el fundamento de la paternidad. Por ello creemos que el estándar del mejor interés del niño no es lo mejor para el niño en las unidades de neonatología y especialmente en los procesos de decisión sobre mantener o suspender los tratamientos de soporte vital

Since its inceptions, the standard of best interest of the child was linked to decisions about suspend life-sustaining treatments in neonatal units and evaluation of treatments applied to children in terms of their quality of life. This origin has conditioned the interpretation of the standard from two extremes: a vitalistic one, and a non vitalistic interpretation that triumphed in Western bioethics and has led to the consecration of the standard of best interest of the child in the Convention on the Rights of the Child of United Nations. A detailed analysis reveals a simplistic, utilitarian and proportionalist standard, which change the basis of parenthood. We therefore believe that the standard of the best interest of the child is not the best for the child in neonatal intensive care units and especially not in the process of withhold or withdrawal life-sustaining treatments

La bioética ha muerto. Viva la ética médica / Bioethics is dead. Long live medical ethics

El objeto de este artículo es mostrar la crisis paradigmática que vive la bioética académica. Desde que una parte importante del gremio de los bioeticistas comenzó a relativizar la prohibición ética de dar muerte a un ser humano inocente, de una forma u otra comenzó a aliarse con la industria de la muerte: el negocio del aborto provocado y, después, de la eutanasia. La tesis de este trabajo es que al cruzar ese Rubicón la bioética se ha corrompido, y ha perdido su conexión con el discurso ético, político y jurídico. Sólo cabe esperar que resurja de sus cenizas si recupera el «tabú» de la sacralidad de la vida humana, algo para lo que la Ética Médica podría suministrar una ayuda inestimable, pues aún se conserva ahí la referencia de que «un médico no debe matar», si bien en forma excesivamente discreta, y algo avergonzada. De todos modos, los médicos con conciencia saben más de ética que la mayor parte de los bioeticistas

The purpose of this paper is to show a paradigmatic crisis in academic bioethics. Since an important part of bioethicists began to relativize the ethical prohibition of killing an innocent human being, one way or another they began to ally with the death industry: the business of abortion, and then that of euthanasia. The thesis of this paper is that by crossing that Rubicon bioethics has been corrupted and has lost its connection to the ethical, political and legal discourse. One can only hope that it will revive from its ashes if it retakes the taboo of the sacredness of human life, something for which medical ethics could provide invaluable help, because it still keeps the notion that a doctor should not kill, although in an excessively discreet and somehow «ashamed» way. However, conscientious doctors know more about ethics than most bioethicists

Empirical bioethics research is a winner, but bioethics mission creep is a false alarm.

While we do not share Evans's view that social science research is needed to shield bioethics from competitive threat, we incorporate and engage in social science research to inform our knowledge base, our clinical practice, and our contributions to the ongoing development of the field.

Power and jurisdiction.

In response to Flamm and Kodish, I argue that our misunderstanding or disagreement is primarily the result of different definitions of power. I also disagree with them and claim that they are indeed using the public's ethics. Finally, I argue that there is no reason to think that bioethicists cannot have the same sort of influence in the boardroom that they have in the clinic.

Discursos de género y bioética / Gender discouses and bioethics

El objetivo de este trabajo es presentar algunas de las aportaciones del discurso de género al debate bioético y, de manera especial, al ámbito de la Enfermería. Asimismo, trata de valorar las contribuciones de las diversas corrientes feministas al reconocimiento y respeto del principio de la dignidad humana. En términos muy generales, se articula sobre tres modelos fundamentales de discurso de género: el igualitarista, el de la diferencia y el de la reciprocidad o complementariedad. La tesis de partida es que los dos primeros modelos, aunque han realizado importantes aportaciones en el campo de la bioética, también han trasladado a él algunas insuficiencias y reduccionismos inherentes a su pensamiento. Frente a ello, se defiende que el modelo de la complementariedad, adecuadamente entendido, permite compaginar los principios de igualdad y diferencia entre varón y mujer, lo cual le sitúa en una perspectiva mucho más enriquecedora para el debate bioético

The purpose of this paper is to present some of the contributions of the gender discourse to the bioethical debate, specifically in the field of nursing. At the same time, it will explain the contribution of the different feminist theories to the recognition and respect of human dignity. Basically, it will describe the three fundamental models in the gender discourse: the egalitarian model, the difference model, and the model of reciprocity or complementarity. The starting point is that even though the first two models have made significant contributions in the field of bioethics, they have nonetheless brought with them some deficiencies and reductionisms inherent in their thinking. The complementarity model, on the contrary, when properly understood, allows for the combination of the principles of equality and difference between man and woman, which places it at a much more enriching standpoint within the bioethical debate

Defending the jurisdiction of the clinical ethicist.

In this essay I suggest that the bioethics profession's jurisdiction over healthcare ethics consultation is in need of reinforcement. I argue that as the profession becomes more successful, competitors will challenge the profession to justify its ethical claims and ask whose ethics the profession represents. This challenge will come more quickly as the profession tries to influence the ethics of healthcare organizations. I propose a method of bolstering jurisdiction that will make the profession less vulnerable to challenge in the future.

Can the social sciences save bioethics?

John Evans proposes some ways in which the social sciences can improve bioethics: by recognizing that it is a profession, that it embrace the four principles advanced by Beauchamp and Childress over the years, and that ethical commissions and committees make use of social science research to determine and use the values of the public. All three of these proposals are challenged.

Clinical ethicists: consultants or professionals?

John H. Evans's views on the multiple roles of healthcare ethics consultants are based on his claim that bioethics is a "distinct profession" that has a "system of abstract knowledge." This response to Professor Evans disputes both of his claims. It is argued that clinical ethicists are consultants but not professionals. Their roles as consultants require more than one abstract form of knowledge (principlism). Instead, clinical ethicists rely upon a variety of ethical perspectives and other skills to help resolve conflicts and facilitate healthcare decisions and policy making, whether it is in clinical, research, policy, or organizational contexts. The credibility and effectiveness of clinical ethicists depend upon their knowledge of ethics, their practical experience, and personal abilities, not one form of abstract knowledge.

Response to Callahan and Winslade.

I respond to commentaries by Daniel Callahan and William J. Winslade on my article, "Defending the Jurisdiction of the Clinical Ethicist," all of which are in this issue of JCE.

How bioethics can enrich medical-legal collaborations.

Medical-legal partnerships (MLPs) - collaborative endeavors between health care clinicians and lawyers to more effectively address issues impacting health care - have proliferated over the past decade. The goal of this interdisciplinary approach is to improve the health outcomes and quality of life of patients and families, recognizing the many non-medical influences on health care and thus the value of an interdisciplinary team to enhance health. This article examines the unique, interrelated ethical issues that confront the clinical and legal partners involved in MLPs. We contend that the ethical precepts of the clinical and legal professions should be seen as opportunities, not barriers, to further the interdisciplinary nature of MLPs. The commonalities in ethical approaches represent a potential bridge between legal and health care advocacy for patient/client well-being. Bioethics has a role to play in building and analyzing this bridge: bioethics may serve as a discourse and method to enhance collaboration by highlighting common ethical foundations and refocusing legal and clinical partners on their similar goals of service for patients/clients. This article explores this bridging role of bioethics, through a series of case studies. It concludes with recommendations to strengthen the collaborations.

Toward a better bioethics: commentary on "Forbidding science: some beginning reflections".

It has been argued that bioethicists too often tend to represent the interests of scientists and not of the broader polity. Indeed, bioethicists seem predisposed to discard the voices and viewpoints of all but the cognoscenti. Focusing particularly on human pluripotent stem cell research, this commentary explores a variety of characterizations of bioethics and bioethicists in relation to forbidding science. Rather than proselytizing or prohibiting, bioethicists should work in partnership with scientists and publics to craft scientifically well-informed and morally sophisticated debates about forbidding science.

Dialogical nursing ethics: the quality of freedom restrictions.

This article deals with the question of how ethicists respond to practical moral problems emerging in health care practices. Do they remain distanced, taking on the role of an expert, or do they become engaged with nurses and other participants in practice and jointly develop contextualized insights about good care? A basic assumption of dialogical ethics entails that the definition of good care and what it means to be a good nurse is a collaborative product of ongoing dialogues among various stakeholders engaged in the practice. This article discusses the value of a dialogical approach to ethics by drawing on the work of various nursing scholars. We present a case example concerning the quality of freedom restrictions for intellectually disabled people. Issues for discussion include the role and required competences of the ethicist and dealing with asymmetrical relationships between stakeholders.

Ethicians, ethicists and the goals of clinical ethics consultation.

We believe that clinical ethics consultation (CEC) has as its goal the delivery of healthcare in a manner consistent with the moral rules and the moral ideals. Towards this end, CEC pursues the instrumental ends of clarifying the limits of acceptable ethical disagreement and facilitating a choice among ethically acceptable alternatives. In pursuing these ends, healthcare ethics consultation (HEC) and CEC services confront three broad categories of questions: (1) questions of professional duty; (2) questions of law; and (3) questions of general morality. Professional duty questions concern what has been referred to as the "internal morality of medicine", and include questions such as the medical legitimacy of the goal(s) being pursued, or the acceptability of the means being employed. Questions of law concern themselves with what the law requires, permits or prohibits. Questions of general morality include all those not falling within the scope of the above categories. We submit that this has implications for the organization and structure of consultation services and HEC and for the methodology and processes employed in CEC. Thus: (1) questions of professional duty should be addressed only by physician members (whom we would distinguish by employing the term "ethicians") of the HEC or CEC service. The only role for non-ethicians under these circumstances would be in helping to resolve disagreements between/among professionals; (2) questions of law, in contrast, should be addressed only by the attorney member(s) of the HEC or CEC service; (3) questions of general morality may be addressed by the entire membership of the HEC or CEC service.