The European Union faced high risks from personal data proliferation to individuals’ privacy. Legislation has emerged that seeks to articulate all interests at stake, balancing the need for data flow from EU countries with protecting personal data: the General Data Protection Regulation. One of the mechanisms established by this new law to strengthen the individual’s control over their data is the so-called “right to be forgotten”, the right to obtain from the controller the erasure of records. In gender transition, this (...) right represents a powerful form of control over personal data, especially health data that may reveal a gender with which they do not identify and reject. Therefore, it is pertinent to discern whether the right to have personal data deleted—in particular, health data—is ethically acceptable in gender transition. Towards addressing the ethical dimensions of the right to be forgotten in this case, this study presents relevant concepts, briefly outlines history, ethics and law of records considering the evolution from paper to electronic format, the main aspects of identity construction and gender identity, and explores the relationship between privacy, data protection/information control and identity projection. Also, it discusses in gender transition the relation between “the right to self-determination”, “the right to delete”, and “the right to identity and individuality”. Conclusions on the ethical admissibility of the ‘right to be forgotten’ to control gender-affirming information are presented. (shrink)

The increasing costs of healthcare delivery led to different political and administrative approaches trying to preserve the core values of the welfare state. This approach has well documented weaknesses namely with regard to healthcare rationing. The objective of this paper is to evaluate if independent healthcare regulation is an important tool with regard to the construction of fair processes for setting limits to healthcare. Methodologically the authors depart from Norman Daniels’ and James Sabin’s theory of accountability for reasonableness and try (...) to determine if new regulatory models—namely independent agencies—perform better with regard to the public disclosure of the reasons and rationales of healthcare rationing. In publicly financed healthcare systems independent regulation is an important tool to assure fair and reasonable procedures of prioritising services. In accordance with the principle of public accountability, independent regulatory agencies are particularly well suited to assure publicity of the decision-making processes, relevance of the rationale involved and particularly mechanisms for challenge and dispute resolution regarding limit setting decisions. It follows that independent healthcare regulation could be regarded not only as an instrument for performance improvement but also as a tool of social justice. The authors conclude by stating that accountability for reasonableness should be regarded as a landmark of any healthcare reform. And therefore regulators have the social task of assuring that the rationales for limit-setting decisions are clearly accessible to the public. (shrink)

The world population aged significantly over the twentieth century, leading to an increase in the number of individuals presenting progressive, incapacitating, incurable chronic-degenerative diseases. Advances in medicine to prolong life prompted the establishment of instruments to ensure their self-determination, namely the living will, which allows for an informed person to refuse a type of treatment considered unacceptable according to their set of values. From the knowledge on the progression of Alzheimer disease, it is possible to plan the medical care, even (...) though there is still no treatment available. Irreversible cognitive incapacity underlines the unrelenting loss of autonomy of the demented individual. Such a loss requires the provision of specific and permanent care. Major ethical issues are at stake in the physician–patient–family relationship, even when dementia is still at an early stage. The authors suggest that for an adequate health care planning in Alzheimer disease the living will can be presented to the patient in the early days of their geriatric care, as soon as the clinical, metabolic or even genetic diagnosis is accomplished. They also suggest that the appointment of a health care proxy should be done when the person is still in full enjoyment of his cognitive ability, and that the existence and scope of advance directives should be conveyed to any patient in the early stages of the disease. It follows that ethical guidelines should exist so that neurologists as well as other physicians that deal with these patients should discuss these issues as soon as possible after a diagnosis is reached. (shrink)

In most western countries, there is a 'human organ shortage' with waiting lists for the performance of transplantation. In a recent report of the UNOS Ethics Committee it is stated that there are approximately 31,000 potential recipients on waiting lists, but only one fourth of potential donors give their specific consent. Xenotransplantation--defined as the transplantation of animal cells, tissues or organs into human beings--is associated with particular ethical dilemmas, namely the problems of efficiency and safety of this medical procedure. The (...) objective of this study is to analyse the ethical dilemmas in xenotransplantation with the background of a personal view of moral life. Also, xenotransplantation will be evaluated as far as the legal regulation of transplantation is concerned. In particular, we will consider patients rights in accordance with existing laws on organ and tissue transplantation, animal research and clinical trials. (shrink)

Questions of social justice and health-care costs are some of the concerns of society. The cost caused by cardiovascular diseases can have an enormous impact, and it is important to know what patients think about illness costs when they are hospitalized. Two interviews were realized in a longitudinal study, in a sample of 106 patients submitted to expensive techniques in Cardiology (Portugal), to understand the patients’ perception about the health costs and behavior changes based on awareness. We can conclude that (...) cardiovascular diseases are a global phenomenon that generally affects all social groups. From those interviewed, 83% of the patients agree about getting information concerning the treatments and intervention costs during hospitalization because the information about costs can bring the necessary tools for improvement in patients and health resources; 70.8% of the patients say that this information could bring awareness to the patient’s life, enhancing responsibility and personal autonomy. (shrink)

In all countries where health care access is considered a social right, regulation is both a tool of performance improvement as well as an instrument of social justice. Both social (equity in access) and economical (promoting competition) regulation are at stake due to the nature of the good itself. Different modalities of regulation do exist and usually new regulatory cycles include the creation of stronger regulatory agencies. Indeed, health care regulation is rising steadily in most developed countries as a consequence (...) of the introduction of the New Public Management perspective to provide essential public goods.Health care is delivered by different organisations with very different cultural backgrounds—public and private (profit and non-profit)—that should be accountable for their decisions. Control by regulatory agencies is instrumental to accomplish this goal. However, there is some dispute with regards the degree of regulatory autonomy. The objective of this paper is to determine if independent regulatory agencies (IRAs) are effective in carrying out health care regulation. The authors apply Walshe’s analytical framework to the Regulatory Authority of Health (Portugal) to answer the question if independent regulation works.In conclusion, the two year experience of the Regulatory Authority of Health is important not only because the primary goals of independent regulation were achieved but also because this authority is now a full partner in the health care sector. However, independent agencies need to develop strong mechanisms of accountability because good regulatory governance is the paradigm of this institutional innovation. (shrink)

The lack of economic sustainability of most healthcare systems and a higher demand for quality and safety has contributed to the development of regulation as a decisive factor for modernisation, innovation and competitiveness in the health sector. The aim of this paper is to determine the importance of the principle of public accountability in healthcare regulation, stressing the fact that sunshine regulation—as a direct and transparent control over health activities—is vital for an effective regulatory activity, for an appropriate supervision of (...) the different agents, to avoid quality shading problems and for healthy competition in this sector. Methodologically, the authors depart from Kieran Walshe’s regulatory theory that foresees healthcare regulation as an instrument of performance improvement and they articulate this theory with the different regulatory strategies. The authors conclude that sunshine regulation takes on a special relevance as, by promoting publicity of the performance indicators, it contributes directly and indirectly to an overall improvement of the healthcare services, namely in countries were citizens are more critical with regard to the overall performance of the system. Indeed, sunshine regulation contributes to the achievement of high levels of transparency, which are fundamental to overcoming some of the market failures that are inevitable in the transformation of a vertical and integrated public system into a decentralised network where entrepreneurialism appears to be the predominant culture. (shrink)

The health sector is facing many challenges, and there is a need to maintain the delivery of high‐quality health‐care. Issues related to equity and access to health‐care have emerged in a context of an economic recession in which the sustainability of the health system depends on everyone, including the actions and decisions of professionals. Therefore, nurses and their skills may be the answer to ethical, professional and community health management, but this recession could lead to major problems in the education (...) of nurses in daily health‐care practice. Due to the limited availability of resources, nurses are increasingly taking leadership positions, continuing to develop their critical abilities and thinking skills, and considering sciences such as deontology and ethics. The main goals of this study were to reflect on the economic recession and its impact on health‐care and to demonstrate the contribution of nursing to the sustainability of health‐care and in the promotion of individuals' dignity. The authors conclude that health‐care depends on economic redistribution and, in this context, needs to be equitable and fair. Nurses have the responsibility to develop their profession according to the underlying sciences and can therefore strategically help the healthcare system. (shrink)

In most western countries, there is a ‘human organ shortage’ with waiting lists for the performance of transplantation. In a recent report of the UNOS Ethics Committee it is stated that there are approximately 31,000 potential recipients on waiting lists, but only one fourth of potential donors gave their specific consent.Xenotransplantation – defined as the transplantation of animal cells, tissues or organs into human beings – is associated with particular ethical dilemmas, namely the problems of efficiency and safety of this (...) medical procedure. The objective of this study is to analyse the ethical dilemmas in xenotransplantation with the background of a personal view of moral life. Also, xenotransplantation will be evaluated as far as the legal regulation of transplantation is concerned. In particular, we will consider patients rights in accordance with existing laws on organ and tissue transplantation, animal research and clinical trials. (shrink)

In Brazil, induced abortion in adolescents has been frequent in less-advantaged socioeconomic classes, and the vulnerability of these adolescents has not been addressed. Given this context, the present study sought to investigate the relationship between the practice of abortion and vulnerability in adolescents. This was a descriptive cross-sectional study of 201 adolescents who completed a structured questionnaire that allowed the analysis of variables with respect to intent to abort. The profile of the pregnant adolescents in the sample studied was the (...) following: average age, 16.1 years; stable partner; mulatas; did not use condoms during sexual relations; precocious with respect to their first sexual relations; and did not plan the pregnancy. According to the classification of the World Health Organization, 81.59% of the subjects‘ abortions were known to be induced. Twenty-one were vulnerable to induced abortion; of these, 13 reported forced sexual intercourse, of whom 8 reported that they had suffered associated violence. These results indicate that sexual violence and unwanted pregnancy subject adolescents to a context of greater vulnerability to induced abortion. Thus, it is suggested that this relationship should be considered from the perspective of bioethics and human rights, but always respecting the cultural values of the society in which the adolescents live, as well as their human dignity. (shrink)

Background:The theoretical framework of Jϋrgen Habermas suggests that effective communication requires competent participants with an objective attitude that complies with the rules and worlds designated as objective, social and subjective. This situation determines communicative action, which stimulates the search for mutual understanding and results in a process of interaction that promotes self-determination.Objectives:In this study, the discharge letters of patients with myocardial infarction were explored regarding the provision of information. The patient’s right to information and the duty of informing were analysed (...) according to the perspective of Jϋrgen Habermas.Research design:This was a cross-sectional analysis of all discharge letters that were directly related to nursing interventions regarding the provision of information to 106 patients. In this major study, the difficulties faced by patients who experienced a myocardial infarction and the changes in their lifestyles were analysed based on the type of information received.Ethical considerations:The hospital Ethics Committee approved the study, which complied with ethical principles and required informed consent.Findings:In the nursing letters, interventions related to the provision of information were conducted at an average of 3.59 interventions per patient. For 8.5% of the patients, however, no interventions related to the provision of information were performed. The most common area of information during hospitalisation was related to the management of signs and symptoms and applied to 90.6% patients.Discussion:The nursing interventions did not cover patient education, transition processes or awareness of the disease. Thus, the right to information can be questioned.Conclusion:Information is a right, and communication is extremely important. Health professionals should be aware of this importance regarding both care management and the satisfaction guarantee. The sharing of information by health professionals based on their competency is essential for patients to exercise their right to self-determination and decision-making. (shrink)

Introduction: All countries face the issue of choice in healthcare. Allocation of healthcare resources is clearly associated with the concept of distributive justice and to the existence of a right to healthcare. Nevertheless, there is still the question of whether this right should include all types of healthcare services or if it should be limited to selected types. It follows that choices must be made, priorities must be set and that efficiency of healthcare services should be maximum.

Changes in modern societies originate the perception that ethical behaviour is essential in organization’s practices especially in the way they deal with aspects such as human rights. These issues are usually under the umbrella of the concept of social responsibility. Recently the Report of the International Bioethics Committee of UNESCO on Social Responsibility and Health has addressed this concept of social responsibility in the context of health care delivery suggesting a new paradigm in hospital governance. The objective of this paper (...) is to address the issue of corporate social responsibility in health care, namely in the hospital setting, emphasising the special governance arrangements of such complex organisations and to evaluate if new models of hospital management (entrepreneurism) will need robust mechanisms of corporate governance to fulfil its social responsiveness. The scope of this responsible behaviour requires hospitals to fulfil its social and market objectives, in accordance to the law and general ethical standards. Social responsibility includes aspects like abstention of harm to the environment or the protection of the interests of all the stakeholders enrolled in the deliverance of health care. In conclusion, adequate corporate governance and corporate strategy are the gold standard of social responsibility. In a competitive market hospital governance will be optimised if the organization culture is reframed to meet stakeholders’ demands for unequivocal assurances on ethical behaviour. Health care organizations should abide to this new governance approach that is to create organisation value through performance, conformance and responsibility. (shrink)

Explicit forms of rationing have already been implemented in some countries, and many of these prioritization systems resort to Norman Daniels’ “accountability for reasonableness” methodology. However, a question still remains: is “accountability for reasonableness” not only legitimate but also fair? The objective of this paper is to try to adjust “accountability for reasonableness” to the World Health Organization’s holistic view of health and propose an evolutionary perspective in relation to the “normal” functioning standard proposed by Norman Daniels. To accomplish this (...) purpose the authors depart from the “normal” functioning standard to a model that promotes effective opportunity for everyone in health care access, because even within the “normal” functioning criteria some treatments and medical interventions should have priority upon others. Equal opportunity function is a mathematical function that helps to hierarchize moral relevant necessities in health care according to this point of view. It is concluded, first, that accountability for reasonableness is an extremely valuable tool to address the issue of setting limits in health care; second, that what is called in this paper “equal opportunity function” might reflect how accountability for reasonableness results in fair limit-setting decisions; and third, that this methodology must be further specified to best achieve fair limit-setting decisions. Indeed, when resources are especially scarce the methodology suggested in this paper might allow not only prioritizing in an “all or nothing” basis but can contribute to a hierarchy system of priorities in health care. (shrink)