BackgroundCountries are increasingly devoting significant resources to creating or strengthening research ethics committees, but there has been insufficient attention to assessing whether these committees are actually improving the protection of human research participants.DiscussionResearch ethics committees face numerous obstacles to achieving their goal of improving research participant protection. These include the inherently amorphous nature of ethics review, the tendency of regulatory systems to encourage a focus on form over substance, financial and resource constraints, and conflicts of interest. Auditing and accreditation programs (...) can improve the quality of ethics review by encouraging the development of standardized policies and procedures, promoting a common base of knowledge, and enhancing the status of research ethics committees within their own institutions. However, these mechanisms focus largely on questions of structure and process and are therefore incapable of answering many critical questions about ethics committees' actual impact on research practices.The first step in determining whether research ethics committees are achieving their intended function is to identify what prospective research participants and their communities hope to get out of the ethics review process. Answers to this question can help guide the development of effective outcomes assessment measures. It is also important to determine whether research ethics committees' guidance to investigators is actually being followed. Finally, the information developed through outcomes assessment must be disseminated to key decision-makers and incorporated into practice. This article offers concrete suggestions for achieving these goals.ConclusionOutcomes assessment of research ethics committees should address the following questions: First, does research ethics committee review improve participants' understanding of the risks and potential benefits of studies? Second, does the process affect prospective participants' decisions about whether to participate in research? Third, does it change participants' subjective experiences in studies or their attitudes about research? Fourth, does it reduce the riskiness of research? Fifth, does it result in more research responsive to the local community's self-identified needs? Sixth, is research ethics committees' guidance to researchers actually being followed? (shrink)
My paper challenges an influential distinction between pain and suffering put forward by physician-ethicist, Eric Cassell. I argue that Cassell’s distinction is philosophically untenable because he contrasts suffering with an outdated theory of pain. In particular, Cassell focuses on one type of pain, the interpretation of nociception induced by noxious stimuli such as heat or sharp objects; yet since the late 1970s, pain scientists have rendered both nociception and noxious stimuli unnecessary for pain. I argue that this discrepancy between Cassell’s (...) distinction and pain science produces three philosophical problems for his distinction: first, he frames his distinction too generally, concentrating on only one type of pain to the neglect of others, such as neuropathy; second, it is possible that Cassell’s understanding of pain may include suffering; and third, Cassell gives examples of pain and suffering manifesting independently of each other, but it is possible that these cases may instead exemplify differences between nociceptive and non-nociceptive types of pain. Due to these problems, I conclude that Cassell’s distinction currently lacks a difference. I call for new efforts to articulate the differences, if any, between pain and suffering. (shrink)
IntroductionA symptom cluster is very common among oncological patients: cancer-related fatigue, emotional distress, sleep difficulties, pain, and cognitive difficulties. Clinical applications of interventions based on non-ordinary states of consciousness, mostly hypnosis and meditation, are starting to be investigated in oncology settings. They revealed encouraging results in terms of improvements of these symptoms. However, these studies often focused on breast cancer patients, with methodological limitations. Another non-ordinary state of consciousness may also have therapeutic applications in oncology: self-induced cognitive trance. It seems (...) to differ from hypnosis and meditation, as it involves the body more directly. Thus, investigating its clinical applications, along with hypnosis and meditation interventions, could improve available therapeutic options in oncology. This article details the study protocol of a preference-based longitudinal controlled superiority trial aiming to assess the effectiveness of 3 group interventions to improve oncological patients’ quality of life, and more specifically CRF, emotional distress, sleep, pain, and cognitive difficulties.Methods and analysisA power analysis required a total sample of 160 patients. Main inclusion criteria are: cancer diagnosis, active treatments completed for less than a year, no practice of hypnosis, meditation, or SICT, and presence of at least one of these four symptoms: fatigue, sleep difficulties, depression, or anxiety. Each participant will choose the intervention in which they want to participate. To test the effectiveness of the interventions, data will be collected by questionnaires and neurobiological measures and directly from the medical record at four time points: before inclusion in the study ; immediately after the intervention; and at 3- and 12-month follow-up. The longitudinal data in each group will then be measured.DiscussionIn addition to standard cancer therapies, there is a growing interest from patients in complementary approaches, such as hypnosis, meditation, and SICT. The results of this study will be useful to increase knowledge about short- and long-term effectiveness of 3 group interventions for CRF, emotional distress, sleep, pain, and cognitive difficulties in patients with different cancers.Clinical Trial RegistrationClinicalTrials.gov/. Retrospectively registered on the 29th of April 2021. url: https://clinicaltrials.gov/ct2/show/NCT04873661. (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)
We reflect, using a vignette, on conceptual tensions and the value judgements that lie behind difficult decisions about whether or not the older person with dementia should return home or move into long-term care following hospital admission. The paper seeks, first, to expose some of the difficulties arising from the assessment of residence capacity, particularly around the nature of evaluative judgements and conceptual tensions inherent in the legal approach to capacity. Secondly, we consider the assessment of best interests around place (...) of residence, which demonstrates significant conceptual tensions. In addition, ‘best interests’ raise issues around the perception of risk and the perceptions of the family and crucially involve the notions of autonomy and trust. Finally, we not only gesture at some practical considerations based on insights from values-based medicine, but also make the suggestion that we require tighter functional assessments of residence capacity coupled with broader judgements about best interests. (shrink)
The purpose of the article is to elaborate on the scholarly debate on affect. We consider the site of affect to be the activities of embodied, socioculturally and spatially situated participants: “Affective activity is a form of social practice” (Wetherell, 2015, p. 147). By studying affect as a social phenomenon, we treat affect as a social ontology. Social practices are constituted through participation in social interaction, which makes it possible to study affect empirically. Moreover, we suggest that to consider affect (...) a social ontology connects affect to agency. We regard affect as a participants’ phenomenon where emotions and knowledge are not separated, i.e. as a social epistemology. To capture the complexity of affective activity, the study of situated participation requires video data. We collected data at a centre for persons with acquired brain injury (ABI), which highlights research ethics. The International Classification of Functioning, Disability and Health (ICF) framework defines participation as involvement in life situations. ICF focuses on two broader perspectives: the body and the individual in society. We turn ICF’s abstract societal perspective on participation to meaningful local accomplishments in lived social practices. Our focus is, in line with a critical social ontology in disability studies, on how-ability, the communicative abilities of the residents (Hughes, 2007). To get closer to life situations as they unfold, we analyse participation in its details as embodied actions during activities in the material environment of the centre. To conclude, we demonstrate a resident’s competent participation in an occupational therapy session through a fine-grained analysis of affective activity. Interaction, practices and phenomena are complex theoretical and practical issues. In the analysis of the encounters as complex multimodal and -sensorial situations, we use an extended version of Ethnomethodological Conversation Analysis (EMCA) that incorporates the body and material environment with the interconnectedness of interactional episodes. To do this, we enlarge the scope of analysis from the complexity of local occasions of affective activity to connections between consecutive affective entanglements. In the indicated work we draw on theoretical (lamination) and methodological (nexus analysis) suggestions in order to best pursue the sociocultural nature of situated interactions. (shrink)
The provision of informed consent is a prerequisite for inclusion of a patient in a clinical research project. In some countries, the legislation on clinical research authorizes a third person to provide informed consent if the patient is unable to do so directly . This is the case during acute stroke, when the symptoms may prevent the patient from providing informed consent and thus require a third party to be approached. Identification of factors associated with the medical team’s decision to (...) resort to surrogate consent may help the care team during the inclusion process and enable the patient’s family circle to be better informed about providing surrogate consent. (shrink)
Background The first COVID-19 wave started in February 2020 in France. The influx of patients requiring emergency care and high-level technicity led healthcare professionals to fear saturation of available care. In that context, the multidisciplinary Ethics- Support Cell (EST) was created to help medical teams consider the decisions that could potentially be sources of ethical dilemmas. Objectives The primary objective was to prospectively collect information on requests for EST assistance from 23 March to 9 May 2020. The secondary aim was (...) to describe the Cell’s functions during that period. Research design This observational, real-time study of requests for Cell consultations concerned ethical dilemmas arising during a public health crisis. The EST created a grid to collect relevant information (clinical, patient’s/designated representative’s preferences and ethical principles strained by the situation), thereby assuring that each EST asked the same questions, in the same order. Participants and research context Only our university hospital’s clinicians could request EST intervention. Ethical considerations The hospital Research Ethics Committee approved this study (no. CER-2020-107). The patient, his/her family, or designated representative was informed of this ethics consultation and most met with EST members, which enabled them to express their preferences and/or opposition. Findings/results 33 requests (patients’ mean age: 80.8 years; 29 had COVID-19: 24 with dyspnea, 30 with comorbidities). 17 Emergency Department solicitations concerned ICU admission, without reference to resource constraints; others addressed therapeutic proportionality dilemmas. Discussion Intervention-request motives concerned limited resources and treatment intensity. Management revolved around three axes: the treatment option most appropriate for the patient, the feasibility of implementation, and dignified care for the patient. Conclusions COVID-19 crisis forced hospitals to envisage prioritization of ICU access. Established decision-making criteria and protocols do not enable healthcare professionals to escape ethical dilemmas. That acknowledgement highlights ethical risks, enhances the added-value of nursing and encourages all players to be vigilant to pursue collective deliberations to achieve clear and transparent decisions. (shrink)
The close friendship between Charlotte Brontë and Mary Taylor began in boarding school and lasted for the rest of their lives. It was Mary Taylor, in fact, who inspired Brontë to leave her oppressive parsonage home and go to Brussels, the eventual setting for her novel, Villette. Mary herself led a much less restricted life, especially in her later years as a feminist essayist who strongly urged women to consider their "first duty" to be working to support themselves. In (...) Miss Miles, her only novel, Taylor breaks with tradition by creating a profoundly feminist and morally intense work which depicts women's friendships as sustaining life and sanity through all of the vicissitudes of Victorian womanhood. She also introduces an innovative narrative form which Janet Murray calls a "feminist bildungsroman": the story of the education of several heroines which emphasizes their friendship and economic and mental well-being rather than their love lives. Set in the small Yorkshire village of Repton against the backdrop of starvation in the wool districts and the rise of Chartism in the 1830s, this recovered feminist classic chronicles the lives of four disparate and individually ambitious women as they learn to find their own voices and support one another. The novel's emphasis on the healing power of women's friendships echoes the relationship between Brontë and Taylor herself. Originally published in 1890, Miss Miles has been unavailable for decades. Its reappearance will delight all lovers of fine literature. (shrink)
Virginia Woolf, in A Room of One’s Own, asked why there were no women writers before 1800. If she had been thinking about philosophers instead of writers in the traditional women’s areas of plays and fiction, she might have asked why there were no women philosophers at all, for I suspect that most people would find it very hard to name a woman philosopher before the present day. To help her in answering her question, she invented a fictional character, Judith (...) Shakespeare, a sister to William Shakespeare. The conditions of Judith’s life made it impossible for her to write, and so Woolf speculated that the women who would have been writers did not lead the kinds of lives that permitted them to realize their talents. Woolf’s image of Judith Shakespeare is a very powerful one but her speculation is only half right. There undoubtedly were many women in the past who would have been talented writers or philosophers if their lives had been different, but Judith Shakespeare’s image can also blot out our knowledge of women who, contrary to Woolf’s speculation, did exist and did write. Indeed, we know now there were even women who wrote philosophy. These women were in many ways exceptional, for Woolf is quite right that most women did not live either with enough privacy or with enough income to allow them to write. Often, they were members of the aristocracy, whose position enabled them to behave eccentrically, sometimes to be able to demand privacy, and sometimes to be able to invite contacts with leading intellectuals. Quite often, these women were childless, which in an age before birth control made them exceptions to the general rule, and at a time when many women were bearing their last child in their forties, was the only thing that could have given them private time. Nevertheless, research in the last ten or fifteen years has uncovered the work of quite a number of these women: for example, Princess Elizabeth of Bohemia, the Electress Sophie, Queen Christina of Sweden, Queen Sophie Charlotte of Prussia, Anne, Lady Conway, Mary Astell, Damaris, Lady Masham, Catharine Trotter Cockburn, Emilie du Chatelet, Catherine Macaulay, Lady Mary Shepherd, and many more. Woolf’s question then comes up again in a slightly different form. Why is it that the work of these women was for so long unknown? Why do so many people even today remain ignorant of the existence of women philosophers before the present day? I am not going to answer this question directly; in fact, I suspect it has multiple answers. Instead, I am going to present a case study from amongst all the cases of all of these women. I hope by considering the history of this woman, and, in particular, considering the way in which she was read, it will be possible to gain some insights into the ways in which women have failed to be incorporated into philosophical history. The woman I am going to discuss is Lady Mary Shepherd. Mary Shepherd actually falls outside of Woolf’s target date of 1800, since she flourished in the first half of the nineteenth century, but this merely reflects my point about the greater ignorance that prevails about women in philosophy. (shrink)
‘Writing Pain’ argues that Anna Seward‘s Letters and Mary Robinson‘s letters create alternative models of sensibility from the suffering poet of Charlotte Smith‘s Elegiac Sonnets. Immensely popular, Smith‘s sonnets made feminine suffering a source of poetic agency by aestheticizing and privatizing it. However, despite their sincerity, her sonnets effaced the physical, nervous body of sensibility on which Seward‘s and Robinsons early poetic reputations had depended and for which they had been mocked. The popularity of Smith‘s model made it an (...) important model for women poets, but, by the end of the eighteenth century, sensibility was also associated with sickness and artifice. For Seward and Robinson, who wanted to build their literary reputations but were living with disabled bodies, Smiths example needed to be reimagined to account for the reciprocity of body and mind as they struggled to write through pain. (shrink)
Feminist theory is a central strand of cultural studies. This book explores the history of feminist cultural studies from the early work of Mary Wollstonecraft, Charlotte Perkins Gilman, Virginia Woolf, Simone de Beauvoir, through the 1970s Women's Liberation Movement. It also provides a comprehensive introduction to the contemporary key approaches, theories and debates of feminist theory within cultural studies, offering a major re-mapping of the field. It will be an essential text for students taking courses within both cultural studies (...) and women's studies departments. (shrink)
Charlotte Wolff was born in Riesenburg, West Prussia into a middle-class Jewish family. She studied philosophy and then medicine at several German universities, completing her doctorate in Berlin in 1926. Working in various institutions over the next few years, she was also interested in psychotherapy and had a small private medical and psychotherapeutic practice. In 1933 she was forced to leave Germany because of the Nazi regime, and settled for a few years in Paris. As a German refugee she (...) was unable to practice medicine, so she began her research into the correlation between hand traits and personality. In 1936 she went to London to continue her research work and lived there until her death. An active lesbian from an early age, her later research turned to sexology and her writing on lesbianism and bisexuality were influential early works in the field. This is a great opportunity to rediscover her early work, including her first autobiography. (shrink)
O renascimento do pragmatismo foi acompanhado por uma série de filósofas feministas que se esforçaram para resgatar do esquecimento as pensadoras que fizeram parte do movimento pragmatista clássico do final do século XIX e primeira metade do século XX. O presente trabalho visa introduzir aos leitores de língua portuguesa esse trabalho a partir de uma breve exposição das pensadoras Jane Addams, Mary Parker Follet, Charlotte Perkins Gilman, Mary Whiton Calkins e Ella Flagg Young.
Introduction -- Defining pluralism : Simon Pokagon, Ida B. Wells-Barnett, and Thomas fortune -- Evolution and American Indian philosophy -- Feminist resistance : Anna Julia Cooper, Jane Addams, and Charlotte Perkins Gilman -- Labor, empire and the social gospel : Washington Gladden, Walter Rauschenbusch, and Jane Addams -- A new name for an old way of thinking : William James -- Making ideas clear : Charles Sanders Peirce -- The beloved community and its discontents : Josiah Royce and the (...) realists -- War, anarchism, and sex : Emma Goldman and Margaret Sanger -- Democracy and social ethics : John Dewey -- Naturalism and idealism, fear, and conventionality : Mary Whiton Calkins and Elsie Clews Parsons -- Race riots and the color line : W. E. B. du Bois -- Philosophy reacts : Hartley Burr Alexander and Morris R. Cohen -- Creative experience : Mary Parker Follett -- Cultural pluralism : Horace Kallen and Alain Locke -- War and the rise of logical positivism : Otto Neurath and Rudolf Carnap -- Mccarthyism and American empiricism : Jacob Loewenberg, Henry Sheffer, C. I. Lewis, and Charles Morris -- The linguistic turn : Gustav Bergmann, May Brodbeck, and W. V. O. Quine -- Resisting the turn : Donald Davidson, Wilfrid Sellars, and the pluralist rebellion -- Philosophy outside : John Muir, Aldo Leopold, Joseph Wood Krutch, and Rachel Carson -- Economics and technology : Lewis Mumford, C. Wright Mills and John Kenneth Galbraith -- Politics : John Rawls, Robert Nozick, Michael Sandel, Martha Nussbaum, and Noam Chomsky -- Civil rights : Martin Luther King, Jr., Richard Wright and James Baldwin -- Black power : Malcolm X, James Cone, Audre Lorde, Bell Hooks, Angela Davis, and Cornel West -- Latin American American philosophy -- Red power, indigenous philosophy : Vine Deloria, Jr. and contemporary American Indian thought -- Feminism -- Engaged philosophy and the environment -- American philosophy today -- Recovering and sustaining the American tradition -- American philosophy revitalized -- The spirit of American philosophy in the new century. (shrink)
Much has been done to establish a body of scholarly work on women pragmatists since Mary Jo Deegan and Charlene Haddock Seigfried first stressed the importance of the contribution of Jane Addams, Florence Kelley, Anna Julia Cooper, Charlotte Perkins Gilman and others to the foundations of the pragmatist tradition of thought. Nevertheless, it took decades to fully correct the gender and race bias of the genealogies: that is, to overcome the temptation of reducing pragmatism to the writings of a (...) few white male professional philosophers living in the areas of Boston or Chicago a century ago. The reconstruction of pragmatism might also require a rethinking of the philosophical canon itself, the ways in... (shrink)
In this paper, I consider pedagogical moments when the project of pedagogy is to _not understand_, as understanding would entail complicity with dehumanization. I explore the slipperiness of understanding and parse when understanding is helpful and when it reinscribes structures of dehumanization. I examine when it might be important in music education pedagogy to foster a refusal to understand, specifically in cases of extreme suffering that might occur in projects of dehumanization, atrocity, and genocide. Then, I explore the ethics embedded (...) in different forms of understanding and consider why not understanding is sometimes the ethical path and tease out the complexities of such refusals to understand. Subsequently, I focus on what music might contribute to this pedagogical approach. I then explore and critique empathy and the project of empathy in education. Ultimately, I consider the role of discomfort in music education to facilitate these kinds of refusals. I center the work of several scholars in this discussion: Sherene Razack (Dark threats and White knights: The Somalia Affair, peacekeeping, and the new imperialism University of Toronto Press Toronto, ON, 2004, Rev Educ Pedag Cult Stud 29 (4): 375-394, 2007), Megan Boler (Feeling power: Emotions and education. Routledge, New York, NY, 1999), Jennifer Geddes (Hypatia 18 (1):104-115, 2003), Charlotte Delbo (_Auschwitz and after_. Yale University Press, New Haven, 1995/2014), Hannah Arendt (Eichmann in Jerusalem: A report on the banality of evil. Penguin Books, New York, NY, 1963/2006), Marie Hållander (Ethics Educ 10(2): 175-185, 2015, Stud Philos Educ 38: 467–480, 2019), Barbara Applebaum (Being White, being good: White complicity, White moral responsibility, and social justice pedagogy. Lexington Books, New York 2010, White educators negotiating complicity: Roadblocks paved with good intentions. Lexington Books, New York, NY, 2022), and Liora Gubkin (Teach Theol Relig 18(2): 103–120, 2015). (shrink)
This is the first modern edition of the works of Lady Mary Shepherd, one of the most important women philosophers of the early modern period. Shepherd has been widely neglected in the history of philosophy, but her work engaged with the dominant philosophers of the time - among them Hume, Berkeley, and Reid. In particular, her 1827 volume Essays on the Perception of an External Universe outlines a theory of causation, perception, and knowledge which Shepherd presents as an alternative to (...) what she sees as the mistaken views of Berkeley and Hume. What she ultimately presents is an original and systematic metaphysics and epistemology. Shepherd's Essays consists of two parts. The first is a theory of perception and knowledge of the external world, which is designed to rebut idealism and skepticism about the external world and show that our ordinary beliefs are based on reason. The second is a collection of essays on topics in metaphysics and epistemology, including the immateriality and eternity of the mind, the relationship between mind and body, the possibility of miracles, the association of ideas, the relationship between physical and mathematical reasoning, and the epistemology of testimony. Antonia LoLordo's edition of Shepherd's Essays includes scholarly notes throughout the text that provide historical and philosophical context and expand on the major concepts of Shepherd's system. Her extensive introduction to Shepherd's life and works surveys some of the major points of Shepherd's system, points out directions for future research, and offers guidance for readers planning to teach her work in their courses. This volume is an invaluable primary resource for scholars, graduate students, and undergraduates interested in metaphysics, epistemology, and early modern philosophy. (shrink)
La riche colonie française de Saint-Domingue est marquée au xviiie siècle par la peur de l’empoisonnement. Marie Kingué, esclave guérisseuse, exerce son activité auprès des blancs comme des esclaves, à la fois de soin, de sorcellerie et de divination. Son autorité morale sur la société locale, exceptionnelle, subvertit les barrières raciales et la hiérarchie de genre, puisqu’elle est, entre autres, sollicitée pour repérer les empoisonneurs, mis au supplice par leurs maîtres sur sa dénonciation. Un rapport anonyme témoigne en 1785 (...) de l’angoisse que ses agissements suscitent auprès des autorités judiciaires de la colonie. Ce document, destiné à justifier les poursuites pénales engagées contre elle, témoigne ce faisant des difficultés à l’arrêter, liées aux importants soutiens dont elle dispose. (shrink)
First published in 1984, Cultural Analysis is a systematic examination of the theories of culture contained in the writings of four contemporary social theorists: Peter L. Berger, Mary Douglas, Michel Foucault, and Jürgen Habermas. This study of their work clarifies their contributions to the analysis of culture and shows the converging assumptions that the authors believe are laying the foundation for a new approach to the study of culture. The focus is specifically on culture, a concept that remains subject to (...) ambiguities of treatment, and concentrates on questions concerning the definition and content of culture, its construction, its relations with social conditions, and the manner in which it may be changing. The books demonstrates how these writers have made strides towards defining culture as an objective element of social interaction which can be subjected to critical investigation. (shrink)
