Harvey and Gurvir’s Law is a bill proposed to the Legislative Assembly of Ontario (Canada) to reduce stigma and bias associated with Down syndrome, by developing and disseminating quality information about Down syndrome in the context of prenatal testing.

BackgroundThe advent of learning healthcare systems (LHSs) raises an important implementation challenge concerning how to request and manage consent to support secondary use of data in learning cycles, particularly research activities. Current consent models in Quebec were not established with the context of LHSs in mind and do not support the agility and transparency required to obtain consent from all involved, especially the citizens. Therefore, a new approach to consent is needed. Previous work identified the meta-consent model as a promising (...) alternative to fulfill the requirements of LHSs, particularly large-scale deployments. We elicited the public’s attitude toward the meta-consent model to evaluate if the model could be understood by the citizens and would be deemed acceptable to prepare for its possible implementation in Quebec.MethodsEight focus groups, with a total of 63 members of the general public from various backgrounds were conducted in Quebec, Canada, in 2019. Explicit attention was given to literacy levels, language spoken at home and rural vs urban settings. We assessed attitudes, concerns and facilitators regarding key components of the meta-consent model: predefined categories to personalized consent requests, a dynamic web-based infrastructure to record meta-consent, and default settings. To analyse the discussions, a thematic content analysis was performed using a qualitative software.ResultsOur findings showed that participants were supportive of this new approach of consent as it promotes transparency and offers autonomy for the management of their health data. Key facilitators were identified to be considered in the implementation of a meta-consent model in the Quebec LHSs: information and transparency, awareness campaigns, development of educational tools, collaboration of front-line healthcare professionals, default settings deemed acceptable by the society as well as close partnerships with recognized and trusted institutions.ConclusionsThis qualitative study reveals the openness of a sample of the Quebec population regarding the meta-consent model for secondary use of health data for research. This first exploratory study conducted with the public is an important step in guiding decision-makers in the next phases of implementing the various strategies to support access and use of health data in Quebec. (shrink)

La Colombiade war bis zur französischen Revolution ein in Frankreich und in den westeuropäischen Ländern vielbeachtetes Epos. Aus heutiger Sicht ist das gut lesbare Gedicht erneut von Interesse: es wägt Segnungen und Schäden der Kolonialisierung gegeneinander ab, propagiert die Idee eines auf wissenschaftlichem und humanistischem Ethos gegründeten Europas, und artikuliert das aufklärerische Selbstbewusstsein einer schreibenden Frau. Die Einführung der Herausgeberin stellt das Gedicht in den Wissenshorizont der Entstehungszeit und skizziert die Rezeption. Der Anhang informiert über Textvarianten, bringt erläuternde Anmerkungen und (...) einen bibliographischen Informationsteil. (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...

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)

Ce colloque devenu livre comble une lacune. Alors que le sujet a été labouré pour le xviiie siècle, aucune synthèse n’existait jusque-là sur le mariage dans la littérature du xixe siècle. Or, la rupture avec les Lumières est frappante comme l’attestent, par exemple, les réécritures d’Inès de Castro étudiées par Maurizio Melai. Le thème du « mariage interdit », inspiré par la tragédie d’Houdar de la Motte (1723) mais subverti un siècle plus tard, illustre le passage de l’Ancien Régime aristocr...

Although non-profit organisations typically have high representation of females on their boards, relatively little is known about the effects of gender diversity in these organisations particularly in relation to financial management. In this archival study, resource dependency theory and agency analysis are combined to provide theoretical insight and empirical analysis of gender diversity on effective financial management in member-governed, community financial institutions. The investigation is possible due to the unique characteristics of the organisational form and region being examined—credit unions in (...) Northern Ireland. The sector has not been subject to external regulation on board gender, yet a wide array of gender mix on boards ranging from 100 % male to 100 % female are in existence. In addition, effective financial management is crucial to their survival and their ability to meet member objectives. Boards with higher female representation exhibit superior financial management first, in respect of loan book quality in the period of austerity following the financial crisis and second when measured against return on assets. (shrink)

In dialogue with the most famous myth for the origin of different languages - The Tower of Babel - A Psychoanalytic Exploration on Sameness and Otherness: Beyond Babel provides a series of timely reflections on the themes of sameness and otherness from a contemporary psychoanalytic perspective. How are we dealing with communication and its difficulties, the confusion of tongues and loss of common ground within a European context today? Can we move beyond Babel? Confusion and feared loss of shared values (...) and identity are a major part of the daily work of psychoanalytic psychotherapists. Bringing together an international range psychoanalytic practitioners and researchers, the book is divided into six parts and covers an array of resonant topics, including: language and translation; cultural identity; families and children; the cyber world; the psychotherapeutic process; and migration. Whereas the quest for unity, which underpins the myth of Babel, leads to mystification, simplification and the exclusion of people or things, multilingual communities necessitate mutual understanding through dialogue. This book examines those factors which further or threaten communication, aiming not to reduce but to gain complexity. It suggests that diversification enriches communication and that, by relating to others, we can create something new. As opposed to cultural and linguistic homogeneity, Babel is not only a metaphor for mangled communication, alienation, and distraction, it is also about the acceptance or rejection of differences between self and other. This book will be of great interest to psychoanalytic psychotherapists and researchers from a wide variety of backgrounds. (shrink)

The aim of this article is to add to the research surrounding nurses' work in hospitals. Throughout history, nurses have faced adverse working conditions, an aspect of their work that remains remarkably unchanged today. Prevailing historical ideologies and sociopolitical conditions influences the context of nurses' work in contemporary hospitals. This research revealed how ruling patriarchal power and nurses' altruistic ways normalize the conditions in hospitals as nurses' work. Moving discourses further add to the work of nurses in hospitals. For example, (...) cost containment strategies, overcapacity and short staffing have resulted in practices to accommodate these problems. While contemporary hospitals may look different, clearly, inside, little has changed since the early days; hospital issues have clearly become an ordinary part of nurses' work. This article discusses how the conditions in hospitals have become an ordinary part of nurses' work. The research in this article emphasizes how prevailing ideologies and institutional discourses make invisible and taken‐for‐granted, how this normalizing of nurses' work contributes to sustaining the hospital's power. (shrink)

La biologie se comprend en termes d'échanges entre le dedans et le dehors, soi et les autres ; mais toute croissance implique une assimilation d'éléments extérieurs. Les querelles frontalières entre disciplines sont l'équivalent des crises de croissance: phénomènes inévitables, douloureux, mais source de métamorphoses.By offering an anthropological view of attraction and exclusion processes in human as well as animal groups, the author proposes to take a step back from the bitter disciplinary "border" disputes to better perceive the discipline's continuous construction (...) process. (shrink)

L'article met en cause l'efficacité des différentes machines à communiquer dans la mesure où elles ne sont pas centrées sur les besoins humains. D'où le paradoxe d'un lien social effiloché, voire détruit, au fur et à mesure que les outils techniques se multiplient. Les fractures sociales ainsi engendrées se rencontrent en Amérique latine où l'identité culturelle issue des luttes coloniales se heurte de plein fouet aux structures verticales à sens unique des dispositifs de communication. Mais la déchirure s'observe aussi en (...) Europe, où l'on rencontre l'«illectronisme» dans toutes les classes sociales. S'observe aussi une montée des « suspicions » envers les contenus diffusés dont l'authenticité et la neutralité sont mises en doute.The article calls into question the effectiveness of different communication devices insofar as they are not focused on human needs. Hence the paradox of social bonds frayed or destroyed, as and as technical tools multiply. Social divisions thus generated is found in Latin America where cultural identity after colonial struggles collides with vertical structures-way communication devices. But tearing is also observed in Europe, where we meet the "illectronisme" in all social classes. Is also observed a rise in "suspicions" to broadcasting content whose authenticity and neutrality are in doubt. (shrink)

Anne-Marie Schultz explores Plato’s presentation of Socrates as a philosopher who tells narratives about himself in the Theaetetus, Symposium, Apology, and Phaedo. She argues that scholars should regard Socrates as a public philosopher, while examining Socratic self-disclosive practices in the works of bell hooks, Kathy Khang, and Ta-Neishi Coates.

After receiving a copy of Metaphysics as a Guide to Morals, Murdoch’s friend Brian Medlin writes back: ‘So far I think I disagree with what you say in “Wittgenstein and the Inner Life,” but I’ll have to make sure that I’ve understood you aright before I launch into a complaint.’ Here, I reconstruct Murdoch’s reading of Wittgenstein and show its ambivalence. While Murdoch acknowledges Wittgenstein’s aim to dissolve illusionary ideas about the inner, she also thinks he presents substantial theses threatening (...) the reality of inner life. Murdoch’s misreading of Wittgenstein as a constructive philosopher may be what worries Medlin, and it also prevents Murdoch from seeing Wittgenstein as an ally in the endeavour to demonstrate the morally transformative potential of our inner lives. (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)

_From a renowned foreign-policy expert, a new paradigm for strategy in the twenty-first century_ In 1961, Thomas Schelling’s _The Strategy of Conflict_ used game theory to radically reenvision the U.S.-Soviet relationship and establish the basis of international relations for the rest of the Cold War. Now, Anne-Marie Slaughter—one of _Foreign Policy’_s Top 100 Global Thinkers from 2009 to 2012, and the first woman to serve as director of the State Department Office of Policy Planning—applies network theory to develop (...) a new set of strategies for the post-Cold War world. While chessboard-style competitive relationships still exist—U.S.-Iranian relations, for example—many other situations demand that we look not at individual entities but at their links to one another. We must learn to understand, shape, and build on those connections. Concise and accessible, based on real-world situations, on a lucid understanding of network science, and on a clear taxonomy of strategies, this will be a go-to resource for anyone looking for a new way to think about strategy in politics or business. (shrink)

Future mobility planning to cope with ongoing environmental challenges such as air pollution has to be anchored in the work of every public authority worldwide. One recent trend that could support public authorities to meet the European Union’s sustainability targets is the creation and sharing of transport and mobility “big” data between public authorities via tools such as crowdsourcing. While the benefits of the use of big data to increase public authorities’ efficiency and effectivity and their citizens’ lives is well (...) understood, examples from the public sector that highlight public authorities’ engagement in such sharing activities is still missing. To date relevant literature has highlighted issues around the capacity of public authorities that hinder shared activities. In this paper we want to raise distrust as a key reason for lack of engagement. Based on comprehensive data collected over the period of 4 years via several workshops and semi-structured interviews with seven public authorities in Europe, we are able to demonstrate that a major obstacle for not providing and sharing data via crowdsourcing for mutual benefit lies primarily in the hands of the public authority’s servants of the middle and high-level management. Our results show firstly, that distrust may emerge toward different referents such as the community, particular individuals, or the technology itself and thus, managerial implications have to be very specific to overcome distrust. Secondly, we show how distrust may spread from one referent to another through negative reciprocity and which, if unchecked may lead to an all-encompassing state that affects the whole sharing economy framework and inhibits potential benefits. (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.

At forstå med kroppen – Udvalgte dele af Løgstrups kritik af Kant.

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

Dans un article consacré au nom de famille, une juriste pose une question récurrente : « Le système onomastique a-t-il un genre? » La réponse affirmative donnée ne surprendra pas. S’il est certain que l’évolution du droit et des mœurs conduit à plus d’égalité, le nom reste, en droit civil, une des dernières règles reflétant les rapports hiérarchiques de pouvoir entre les hommes et les femmes dans la famille. Le nom des femmes, comme mères ou épouses, semblent encore aujourd’hui être (...) le refle... (shrink)

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)

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)

Hannah James makes a persuasive case for the use of donated bodies and body parts in surgical training, enabling high fidelity training, improved competency of surgeons and reduced risk of harm to patients from trainees ‘learning on the job’.1 She also identifies some pertinent ethical questions that arise from this practice that should be considered by training organisations, regulatory authorities and the trainees themselves. Many countries throughout the world have regulated programmes, governed by strict ethical principles, for donating bodies, usually (...) to academic institutions for the purposes of medical education.2 In the UK the Human Tissue Authority sets out guiding principles for institutions licensed to handle human tissue including donation of bodies for anatomical examination, education and research; consent, dignity, quality, and honesty and openness.3 The Nuffield Council on Bioethics, in its 2011 report, Human Bodies: donation for medicine and research, identified a number of relevant ethical values including autonomy, altruism, justice, dignity, reciprocity, maximising welfare, and honesty and respect.4 While this report did not focus specifically on donation of human tissue for education and training the principles identified are equally relevant in this context. In terms of maximising welfare whole body donation for education and training provides benefit to many patients over a relatively short time frame …. (shrink)

Focusing on discourses and practices of identity in an Italian organization in London, this article examines the relationship between the construction of the identity of places and the construction of terrains of belonging. Various forms of cultural practices that mark out spatial and identity boundaries for the London Italian population are discussed in relation to the deployment of gender and ethnicity. Advancing a corporeal approach to identity formation, it is argued that displays of the Italian presence in London operate through (...) the repetition of regulatory norms that produces the effect of materialization of cultural belonging through the ethnicizing and gendering of individual bodies. Gender and ethnicity are deeply embedded in one another and their entwinement is to be understood as the outcome of their construction along similar bodily lines. Also, the author shows that gender and ethnicity are mutually dependent on each other for their construction; imperatives of gender serve to stabilize a fluctuating and indeterminate ethnic culture, while ethnic conventions naturalize the different positions men and women occupy in social life. (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)