The death of a research participant raises numerous ethical and legal issues regarding the return of research results to related family members. This question is particularly acute in the context of genetic research since the research results from an individual may be relevant to each of the biological relatives. This paper first investigates the ethical and legal frameworks governing the return of a deceased participant's individual research results to his or her related family members. Then, it weighs the rights and (...) interests of both the deceased individual and related family members in an attempt to identify key ethical considerations underlying the return of such results. This analysis of international guidelines and national laws and regulations reveals that though the legal framework regarding privacy and confidentiality of clinical and research information is well established (albeit not homogenous), guidelines are generally absent in the post-mortem context. Nevertheless, a brief analysis of this issue through two ethical perspectives (principlism and consequentialism) allows us to identify six key elements to be taken into consideration when returning a deceased participant's research results. (shrink)

Until the mid-20th century, biomedical research centered on the study of specific diseases, concerned with short periods of time and small groups of living research participants. However, the growth of longitudinal population studies and long-term biobanking now forces the research community to examine the possibility of the death of their research participants.The death of a research participant raises numerous ethical and legal issues, including the return of deceased individuals’ research results to related family members. As with the return of individual (...) research results for living research participants, the question of the obligation to return a deceased person’s research results to family members has yet to be settled. This question is particularly acute in the context of genetic research since the research results from one individual may have health implications for all biological relatives. (shrink)

A recent Organisation for Economic Co-Operation and Development survey demonstrated that an internationalization of genetic laboratory services currently emerged from the rarity of certain genetic abnormalities and from the small of laboratories performing specialized testing. When DNA samples cross national boundaries for genetic testing services to be performed in another country, the heterogeneity of national legal frameworks raises important questions regarding quality of genetic services available internationally.Some aspects of the genetic laboratories’ services are abundantly discussed by the literature, among which (...) most prominent are quality control standards and patients rights. Firstly, a 2003 study identified key distinctions between the different legal frameworks for genetic services. While some countries impose exhaustive regulatory requirements, others favor guidelines for good practices. Moreover, proficiency assessment, clinical validity, retention of laboratory records and test reports are not dealt with uniformly. (shrink)

Rare Disease research has seen tremendous advancements over the last decades, with the development of new technologies, various global collaborative efforts and improved data sharing. To maximize the impact of and to further build on these developments, there is a need for model consent clauses for rare diseases research, in order to improve data interoperability, to meet the informational needs of participants, and to ensure proper ethical and legal use of data sources and participants’ overall protection. A global Task Force (...) was set up to develop model consent clauses specific to rare diseases research, that are comprehensive, harmonized, readily accessible, and internationally applicable, facilitating the recruitment and consent of rare disease research participants around the world. Existing consent forms and notices of consent were analyzed and classified under different consent themes, which were used as background to develop the model consent clauses. The IRDiRC-GA4GH MCC Task Force met in September 2018, to discuss and design model consent clauses. Based on analyzed consent forms, they listed generic core elements and designed the following rare disease research specific core elements; Rare Disease Research Introductory Clause, Familial Participation, Audio/Visual Imaging, Collecting, storing, sharing of rare disease data, Recontact for matching, Data Linkage, Return of Results to Family Members, Incapacity/Death, and Benefits. The model consent clauses presented in this article have been drafted to highlight consent elements that bear in mind the trends in rare disease research, while providing a tool to help foster harmonization and collaborative efforts. (shrink)

Cherche à mettre en évidence les principes théoriques qui peuvent être au fondement de toute recherche ou réflexion en sociologie de la musique.

A reléguer les valeurs dans la sphère exclusive du privé, le risque est grand de les enfermer dans leur particularité, de leur permettre d’occuper ou prétendre occuper la place de l’universel sans aucune forme de confrontation et de gommer leur pluralité. A les relativiser purement et simplement, le risque n’est pas moins grand de voir la place de l’universel envahie, non par une quelconque valeur particulière, mais par ce qui se veut la mesure publique de toute qualité et appréciation aujourd’hui (...) : les items de compétence. (shrink)

A virtue centred approach to ethics has been criticized for being vague owing to the nature of its central concept, the paradigm person. From the perspective of the practitioner the most damaging charge is that virtue ethics fails to be action guiding and, in addition to this, it does not offer any means of act appraisal. These criticisms leave virtue ethics in a weak position vis-à-vis traditional approaches to ethics. The criticism is, however, challenged by Hursthouse in her analysis of (...) the accounts of right action offered by deontology, utilitarianism and virtue ethics. It is possible to defend the action guiding nature of virtue ethics: there are virtue rules and exemplars to guide action. Insights from Aristotle’s practical approach to ethics are considered alongside Hursthouse’s analysis and it is suggested that virtue ethics is also capable of facilitating action appraisal. It is at the same time acknowledged that approaches to virtue ethics vary widely and that the challenges offered here would be rejected by those who embrace a radical replacement virtue approach. (shrink)

Background In 2001 a report on the provision of clinical ethics support in UK healthcare institutions identified 20 clinical ethics committees. Since then there has been no systematic evaluation or documentation of their work at a national level. Recent national surveys of clinical ethics services in other countries have identified wide variation in practice and scope of activities. Objective To describe the current provision of ethics support in the UK and its development since 2001. Method A postal/electronic questionnaire survey administered (...) to the chairs of all 82 clinical ethics services registered with the UK Clinical Ethics Network in July 2010. Results Response rate was 62% with the majority of responding services situated in acute trusts. All services included a clinical ethics committee with one service also having a clinical ethicist. Lay members were present in 72% of responding committees. Individual case consultation has increased since 2001 with 29% of chairs spending more than 50% of their time on this. Access to and involvement in the process of case consultation is less for patients and families than for clinical staff. There is wide variation in committee processes and levels of institutional support. Over half of the responding committees undertook some form of evaluation. Conclusion Clinical ethics services in the UK are increasing as is their involvement in case consultation. However, the significant variation in committee processes suggests that further qualitative research is needed to understand how these committees function and the role they play in their institution. (shrink)

This book explores five Platonic dialogues: Lysis, Charmides, Protagoras, Euthydemus, and the Republic. This book uses Socrates’ narrative commentary as its primary interpretive framework. No one has engaged in a sustained attempt to explore the Platonic dialogues from this angle. As a result, it offers a unique contribution to Plato scholarship. The portrait of Socrates that emerges challenges the traditional view of Socrates as an intellectualist and offers a holistic vision of philosophical practice.

This article is presented as a defence of voluntary active euthanasia from a virtue perspective and it is written with the objective of generating debate and challenging the assumption that killing is necessarily vicious in all circumstances. Practitioners are often torn between acting from virtue and acting from duty. In the case presented the physician was governed by compassion and this illustrates how good people may have the courage to sacrifice their own security in the interests of virtue. The doctor's (...) action created huge tensions for the nurse, who was governed by the code of conduct and relevant laws. Appraising active euthanasia from a virtue perspective can offer a more compassionate approach to the predicament of practitioners and clients. The tensions arising from the virtue versus rules debate generates irreconcilable difficulties for nurses. A shift towards virtue would help to resolve this problem and support the call for a change in the law. The controversial nature of this position is acknowledged. The argument is put forward on the understanding that many practitioners will not agree with the conclusions reached. (shrink)

Euthanasia has once again become headline news in the UK, with the announcement by Dr Michael Irwin, a former medical director of the United Nations, that he has helped at least 50 people to die, including two between February and July 1997. He has been quoted as saying that his ‘conscience is clear’ and that the time has come to confront the issue of euthanasia. For the purposes of this article, the term ‘beneficent voluntary active euthanasia’ (BVAE) will be used: (...) beneficent from the prima facie principle of beneficence, to do good, and voluntary to indicate that this must be carried out at the request of a competent client. This implies adherence to another prima facie principle, that of respect for autonomy. Active implies that something is done or given with the intention of hastening death. The word euthanasia itself simply means ‘good death’. This article examines the moral positions of two nurses and one junior doctor towards the subject of BVAE and an attempt is made to represent the main conflicting moral positions. The central arguments against BVAE and counterarguments are presented. The conclusion reached is that consenting adults should not be prevented from availing themselves of BVAE if another consenting adult (a medical doctor) is available and capable of carrying out their wishes. This being the case, it is suggested that BVAE should be available as an option in hospices and in the community. The aims of this article are: to generate debate among professionals; to present a three-way discussion that might be useful as a focus for educational purposes, particularly at undergraduate level; to challenge professionals to confront the issue of euthanasia; and to plead the case of those who request assistance in exercising autonomy by gaining control over their own deaths. (shrink)

The article claims that Ziauddin Sardar's contribution to the religion-science conversation is primarily a performance situated in a social location that gives him access to a highly significant perspective. Sardar places Western science within the context of the Western culture from which it emerged and which it continues to serve. The contemporary hegemonous science of today is one form of science. Its acceptance as a universal and objective form enables its users and promoters to exercise imperialistic control over much of (...) the world. Sardar's critique receives its effective bite from his social location as an immigrant Muslim, raised and educated in Western culture. The article examines the relevance of his social location to the issues with which he is most concerned, such as promotion of the rights and responsibilities of cultures, in particular Islamic cultures, traditionally cast as "Other" by the West. They too have their sciences and these sciences function often within worldviews that are "religious." Sardar's critique of science and his call for the recognition of the so-called Other cultures is significant for its performativity. His work is not merely a descriptive or explanatory account, but bears also the performative characteristics that seek to effect the change for which he calls. (shrink)

There is no concept, no matter how strange, in which human beings are not willing to believe fervently, so long as it offers some comfort from the knowledge that one day they will no longer exist, so long as it gives him them hope of some form of eternal life. Norbert Elias1.

The problems of exposing students to real life situations in which they can gain an insight into the dilemmas experienced by clients and staff are highlighted. The value of the Greek notion of catharsis (katharsis: a cleansing) is discussed and the use of literature is suggested as a means of providing students with vicarious experience of the real, but often inaccessible, situations in which nurses may have to make moral decisions.

In this article, I investigate the similarities and differences between the ways we relate to the other in ethics and in love through an engagement with the thinking of K.E. Løgstrup and Emmanuel Levinas. My point of departure will be a reading of a novel by Maja Lucas, Mother, which brings out the important and complicated nature of the relation between ethics and love. My main concern, however, is to investigate how Løgstrup’s and Levinas’s different conceptions of natural love point (...) to differences in their understanding of the ethical relationship to the other. (shrink)

Anne-Marie Søndergaard Christensen presents a new account of the role of moral philosophy and its relationship to our ordinary moral lives. She challenges the idea that moral theories have an authoritative explanatory or action-guiding role, and develops instead a descriptive, pluralistic, and elucidatory conception of moral philosophy.

In "Implementing Expanded Prenatal Genetic Testing: Should Parents Have Access to Any and All Fetal Genetic Information?," Bayefsky and Berkman argue in favor of establishing three categorie...

Depuis près d'un demi-siècle, Madame Hélène ACKERMANS a coopéré très activement à l'organisation de l'École des sciences philosophiques et religieuses des F.U.S.L. Avec Monseigneur Henri van Camp, elle a donné à la tribune des leçons publiques sa renommée internationale ; auprès de l'actuel comité de direction, elle n'a cessé de prodiguer ses multiples compétences et ses conseils avisés. En hommage à son travail, il a été demandé à quelques-uns des penseurs avec lesquels Madame Hélène ACKERMANS a noué des liens d'amitié, (...) de réfléchir au rôle de la philosophie dans la Cité. (shrink)

This paper forms part of a wider study examining the history and sociology of nursing education in England between 1860 and 1948. It argues that the question of whether nursing was an art, science and/or social science has been at die ‘heart’ of a wider debate on die occupational status and disciplinary identity of nursing. The view that nursing was essentially an art and a ‘calling’, was championed by Florence Nightingale. Ethel Bedford Fenwick and her allies insisted that nursing, like (...) other professions, was a ‘scientific’ and technical enterprise. Social scientists later came to challenge nursing's claim to professionalism by analysing nursing work first within die context of industrial psychology. But they also advocated a rapprochement between nursing, health services and social science research, a challenge which we are in nursing, still striving to meet This paper argues for a strong coalition of nursing with its former nineteenth century ally, social science, in die continuing struggle for change within nursing and health care policy. Rather than searching for some rarified and purified essence of nursing knowledge, it argues that nurses need to join forces with sociologists and economists in striving to shape die agenda for health services research and provide die evidential basis for health policy transformation more generally. (shrink)