Neuronal ceroid lipofuscinoses are a group of lethal inherited neurodegenerative disorders in humans and many animal species. Critical reflections on a range of ethical issues concerning NCL have been instigated by my research on sheep and cattle affected with NCL, the claim that these sheep and cattle are useful models for the disease in humans, and engagement with families and support groups. My reflections on moral status of animals and validity of animal models are outlined in this paper.

Weighing competing obligations and achieving the “greatest balance” of right over wrong guides an individual, an agency or a country in determining what ought to be done in an ethically challenging situation. Conducting controlled human infection model (CHIM) studies in India is one such situation. The ethical challenge in conducting a CHIM study lies in completing the difficult task of introducing standardised, attenuated strains of micro-organisms into normal healthy volunteers, at the same time ensuring the safety of these healthy individuals (...) from potential and completely informed risks in a fashion that is transparent and accountable. The bar is further raised against the background of already fragile public confidence in biomedical research in India; especially when “deliberate” introduction of microbial agents into healthy individuals is involved, with the larger altruistic objective of gain to society as a whole. -/- This paper discusses the uses of CHIM studies with respect to the larger scientific Indian research enterprise of the 21st century. It further explores etic and emic perspectives in conducting such trials in India and seeks to generate an ethical coherence to the justification for conducting CHIM studies in India. The paper deliberates on ethical issues arising out of conducting CHIM studies and reflects on how developing the capacity for CHIM studies in India is likely to strengthen the health research and development sector in the country. -/- . (shrink)

How do we make good moral decisions? There is a tendency to answer this question by developing methods and procedures of moral decision making. In this paper I will show some limits and pitfalls of this approach. Good moral decisions need to take into account factors which cannot be codified into procedures. I draw attention to how analyzing the type of context is a necessary preamble for a better handling of procedures.

Clinical ethics refers to an emerging field in clinical medicine that focuses on the process of ethical decision-making in a clinicalsetting. It has developed as a result of a growing awareness that modern medicine – characterized by technological progress, culturaldiversity and social challenges – is posing a range of new “ethical dilemmas” that medical science alone cannot solve. For thisreason, clinical ethics is often linked to “ethics consultation,” which consists of services provided by an individual ethicist, ethicsteam or committee to (...) address the ethical issues involved in a specific clinical case. Although clinical ethics developed in the beginningmainly as a methodological analysis to arrive at a justification for clinical ethical decisions, it quickly has become clear thatthe difficulty in clinical decision-making is only one aspect of wider ethical problems pertaining to the doctor-patient relationshipas a whole and, most likely, to the core value of the medical profession. The principles method is usually presented as the mostpopular methodological approach to an analysis of clinical cases. However, strong criticism of this model has been voiced, and otheralternative approaches are referred to, such as the casuistry model. Recently, significant contributions have been made by narrativemedicine and virtue ethics. According to these methodologies, sound anthropology and a good relationship with the sick person arekey elements required of any person engaged in medical practice who aims to be genuinely appropriate from an ethical perspective. DOI: 10.5294/pebi.2016.20.1.3. (shrink)

Recent studies in psychosocial oncology that seek to address the social, psychological, emotional, spiritual, quality of life, and functional impacts of cancer, report positive findings for meaning-making interventions designed to help cancer patients cope with their illness experience. These interventions are successful in decreasing depression among cancer patients and increasing life satisfaction, self-esteem, coping, physical functioning, and optimism. Yet, despite these positive findings meaning-making interventions and, more generally psychosocial care, are not well integrated into hospital or healthcare organization routine cancer (...) patient care.This thesis explores practical, theoretical, and bioethical barriers to integrating psychosocial care, focusing primarily on the latter considerations. I will argue that meaning-making interventions fall within the bounds of healthcare professionals’ capacities and duty to care, more to the point, as necessary for quality cancer patient care. The bioethical principle of respect for autonomy, when reconsidered from a feminist standpoint, morally requires the intervention’s inclusion in routine care. (shrink)

The bioethics study method concerns the duties and values that must be fulfilled for respect for life. The aim of this article is to provide a reflection on bioethics in public health actions. It is a review article that includes authors with different positions. Bioethics, despite its apparent individual focus, is vital to fulfil essential functions in public health, and to guarantee the right to health and respect for human dignity.

Euthanasia and assisted suicide have proved to be very contentious topics in medical ethics. Some ethicists are particularly concerned that allowing physicians to carry out these procedures will undermine their professional obligations and threaten the very goals of medicine. However, I maintain that the fundamental goals of medicine not only do not preclude the practice of euthanasia and assisted suicide by physicians, but can in fact be seen to support these practices in some instances. I look at two influential views (...) of the goals of medicine, one based on the broad guiding principles of autonomy, beneficence and nonmaleficence, and the other focusing on several more concrete aims, concluding that both approaches can be seen to support euthanasia and assisted suicide. I then turn to the popular concern that allowing physicians to carry out euthanasia and assisted suicide will lead to widespread abuse. I argue that the possibility for abuse can be minimised if we make the patient's autonomous consent an essential requirement of the practice. (shrink)

Some experts have argued that patients should routinely be told the specific magnitude and absolute probability of potential risks and benefits of screening tests. This position is motivated by the idea that framing risk information in ways that are less precise violates the ethical principle of respect for autonomy and its application in informed consent or shared decisionmaking. In this Perspective, we consider a number of problems with this view that have not been adequately addressed. The most important challenges stem (...) from the danger that patients will misunderstand the information or have irrational responses to it. Any initiative in this area should take such factors into account and should consider carefully how to apply the ethical principles of respect for autonomy and beneficence. (shrink)

Ethics should guide the design of electronic health records (EHR), and recognized principles of bioethics can play an important role. This approach was adopted recently by a team of informaticists designing and testing a system where patients exert granular control over who views their personal health information. While this method of building ethics in from the start of the design process has significant benefits, questions remain about how useful the application of bioethics principles can be in this process, especially when (...) principles conflict. For instance, while the ethical principle of respect for autonomy supports a robust system of granular control, the principles of beneficence and non-maleficence counsel restraint due to the danger of patients being harmed by restrictions on provider access to data. Conflict between principles has long been recognized by ethicists and has even motivated attacks on approaches that state and apply principles. In this paper we show how using ethical principles can help in the design of EHRs by first, explaining how ethical principles can and should be used generally, and then by, discuss how attention to details in specific cases can show that the tension between principles is not as bad as it initially appeared. We conclude by suggesting further ways in which the application of these (and other) principles can add value to the ongoing discussion of patient involvement in their health care. This is a new approach to linking principles to informatics design that we expect will stimulate further interest. (shrink)

Se propone una reflexión sobre el método clínico y sus etapas, la relación médico-paciente y la presencia tecnológica en la Cardiología Pediátrica. La ecocardiografía transtorácica no puede sustituir el pensamiento médico, la anamnesis, ni el examen físico. Como medio diagnóstico realizado e interpretado por humanos, está sujeto a error, el cual se minimiza según la calidad de los datos clínicos aportados por el médico que lo solicita. El presente trabajo tiene como objetivo analizar los aspectos éticos del método clínico en (...) relación con la utilización de la ecocardiografía transtorácica en niños con cardiopatías congénitas. It is proposed a reflexion about the clinical method and its stages, the doctor-patient relation and the presence of technology in paediatric cardiology. The transthoracic echocardiography can4t substitute medical thought, neither the anamnesis nor the physical examination. As a diagnostic medium carried out and interpreted by humans, it is subject to error, which it is minimized according to the quality of the clinical data provided by the doctor who requests them. The present work has the objective to analyse the Ethical foundations of the clinical method in connection with the use of transthoracic echocardiography in children with congenital cardiopathies. (shrink)

La acidificación oceánica es un problema creciente que afecta el medio ambiente global, cuyas repercusiones son detectables ahora, que ponen en riesgo el recurso hídrico más extenso del planeta e incluyen en los cambios climáticos que se pueden documentar en todo el planeta. El presente artículo analiza la protección del medio marino como una medida para asegurar a las generaciones futuras un ambiente sano, que les garantice una mejor forma de vida. Se exponen los diferentes principios que rigen a la (...) bioética, y se establece su relación con los procesos de desarrollo sostenible y el incremento de la acidificación que ocurre en el océano y que afecta a una gran cantidad de comunidades de escasos recursos a nivel mundial. (shrink)