Written by a sociologist and a biologist and science historian, this text considers the social aspects of organ transplantation and chronic hemodialysis. Their research, begun in 1968, focused on the experience of research physicians engaged in this work, the "gift- exchange" social dimensions of these practices, and the impact of these technologies on society as a whole. This reprint of the 1978 edition includes a new introduction by the authors. c. Book News Inc.

Dance is an enjoyable, non-therapy-focused activity that may provide a range of benefits for people with Parkinson’s. The internal simulation of movement through observation, imitation, and imagery, is intrinsic to dance and may contribute to functional improvements for people with Parkinson’s. This study explored the feasibility and potential benefits of a dance program designed by a collaborative team of dance artists, researchers, physiotherapists, and people living with Parkinson’s. The program incorporated motor simulation through observation, imitation and imagery of movement, supported (...) by creative themes, expression, and music. A 6-week pilot trial of the program was conducted with 10 people with Parkinson’s. A focus group following the trial (N= 8) provided insights into the use of imagery, observation and imitation within dance, and the link between creativity and functional outcomes, as well as indicating multidimensional benefits of dance as reported in previous studies. Exploratory outcome measures also suggested potential effects on motor simulation, functional dexterity, and quality of life. The present study demonstrates the feasibility of a co-developed dance program for Parkinson’s and indicates how creative elements of dance may support functional outcomes. Future research should examine the role of motor simulation processes in dance for Parkinson’s, including the potential to develop transferable cognitive-motor skills. This study also highlights the value of collaborative partnerships in designing dance for health programs, which may optimise beneficial effects by using creative approaches to incorporate evidence-based elements, with guidance from individuals with lived experience to ensure the relevance to their goals. (shrink)

In 1986, philosopher-bioethicist Samuel Gorovitz published an essay entitled “Baiting Bioethics,” in which he reported on various criticisms of bioethics that were “in print, or voiced in and around … the field” at that time, and set forth his assessment of their legitimacy. He gave detailed attention to what he judged to be the particularly fierce and “irresponsible attacks” on “the moral integrity” and soundness of bioethics contained in two papers: “Getting Ethics” by philosopher William Bennett and “Medical Morality Is (...) Not Bioethics,” coauthored by us. Gorovitz attributed some of the criticisms that bioethics was eliciting to the fact that this new, rapidly rising, and increasingly visible field had brought “scholars and practitioners together who otherwise would have little exposure to one another's disciplines. Their interactions are mutually enriching at times,” he declared, “but mutually baffling and even infuriating at other times.” In this latter regard, he suggested that “perhaps” Fox and Swazey's characterization of bioethics in the article he dissected “reflects a general revulsion at endeavors they see as inadequately like the social sciences or insufficiently respectful of them.” He went on to say that despite his objections to our “complaints” about bioethics—especially to our claim that “autonomy [had] been an unduly emphasized value” in the field—he had “a lingering sense” that there might be “a grain of truth” in them. Gorovitz ended his essay with an affirmation about the “benefit” that bioethics can derive from “responsible” and even from “irresponsible” criticism. “The unexamined discipline invites the philosopher's critical scrutiny no less than the unexamined life,” he aphoristically concluded. a. (shrink)

To quote Yogi Berra, writing this editorial is a “déja vu all over again” experience for us. It entails not only collaborating once more as coauthors but also reiterating some of the criticisms and concerns that have figured prominently in virtually all our previous publications about bioethics—most recently in our book Observing Bioethics.

They have watched, as insiders, the first fumbling attempts to transplant kidneys, then hearts, then live‐donated lobes of liver and lung. Now the two sociologists most closely identified with organ transplantation have concluded that they must leave the field.

Book reviewed in this article: The Puzzle People: Memoirs of a Transplant Surgeon. By Thomas E. Starzl.

BackgroundClinical trials should be as inclusive as possible to facilitate equitable access to research and better reflect the population towards which any intervention is aimed. Informed by the UK’s National Institute for Health and Care Research (NIHR) Innovations in Clinical Trial Design and Delivery for the Under-served (INCLUDE) guidance, we audited oncology trials conducted by the Clinical Trials and Statistics Unit at The Institute of Cancer Research, London (ICR-CTSU) to identify whether essential documents were overtly excluding any groups and whether (...) sufficient data were collected to assess diversity of trial participants from groups suggested by INCLUDE as under-served by research in the UK.MethodsThirty cancer clinical trials managed by ICR-CTSU and approved between 2011–2021 were audited. The first ethics approved version of each trial’s protocol, patient information sheet, and patient completed questionnaire, together with the first case report forms (CRFs) version were reviewed. A range of items aligned with the INCLUDE under-served groups were assessed, including age, sex and gender, socio-economic and health factors. The scope did not cover trial processes in participating hospitals.ResultsData relating to participants’ age, ethnic group and health status were well collected and no upper age limit was specified in any trials’ eligibility criteria. 23/30 (77%) information sheets used at least one gendered term to address patients. Most CRFs did not specify whether they were collecting sex or gender and only included male or female categories. The median reading age for information sheets was 15–16 years (IQR: 14–15 – 16–17). Socio-economic factors were not routinely collected and not commonly mentioned in trial protocols.ConclusionsNo systemic issues were identified in protocols which would explicitly prevent any under-served group from participating. Areas for improvement include reducing use of gendered words and improving readability of patient information. The challenge of fully assessing adequate inclusion of under-served populations remains, as socio-economic factors are not routinely collected because they fall beyond the data generally required for protocol-specified trial endpoint assessments. This audit has highlighted the need to agree and standardise demographic data collection to permit adequate monitoring of the under-served groups identified by the NIHR. (shrink)

In relationships ‘I’ and ‘you’ become ‘we’; despite individual differences, couples obtain an interdependent identity due to their shared interactions. During a serious illness, biological and biographical disruptions can put any reciprocal relationship under strain. Through intermedial analysis of Judith Fox’s photographic project, I Still Do: Loving and Living with Alzheimer’s, I will explore ways the couple make sense of illness, how illness is communicated through text and image and also to identify the limits of representation. Here the photographs, (...) I argue, solidify their relationship and echo the stuck-in-the-present state of mind brought on by Alzheimer’s. (shrink)

Although the reputation of Englands first queen regnant, Mary Tudor had remained substantially unchanged in the intervening centuries, there were always some defenders of that Catholic queen among the historians of Victorian England. It is worth noting, however, that such revisionism made little if any impact on the schoolroom history textbooks, where Marys reputation remained much as John Foxe had defined it. Such anxiety as there was about attempts to restore something of Marys reputation were made more problematic by the (...) increasing number and increasingly visible presence of a comprehensive Catholic hierarchy in the nineteenth century, and by high-profile converts to the Catholic faith and papal authority. The pre-eminent historians of the later Victorian era consistently remained more favourable to the reign of Elizabeth, seen as the destroyer,of an effective Catholic church in England. (shrink)

We are sad to say that Advisory Board member Renée Fox died on September 23rd. Renée was an extraordinary friend of Perspectives in Biology and Medicine, celebrating and contributing to its uniqueness over many years.Renée was a pioneer in medical sociology who spent most of her career at the University of Pennsylvania. Her research used participant-observation to explore the work of physicians. In Experiment Perilous, she examined troubling practices of doctors who conducted research on their own patients at the Peter (...) Bent Brigham Hospital in Boston. In The Courage to Fail, written with Judith Swazey, she focused on dangers to patients as their physicians used them as experimental subjects to develop... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Principles and Theory in BioethicsPat Milmoe McCarrick (bio)The following citations were selected from BIOETHICSLINE, the online database prepared at the Kennedy Institute of Ethics for the National Library of Medicine's MEDLARS system. Searching the keywords autonomy, beneficence, casuistry, justice, and virtues, as well as the text word principlism produced more than 400 citations. Only the citations concerned with theory and principle in the practice of bioethics are included here—e.g., (...) works about justice in resource allocation have been deleted.Arkes, Hadley V. When Bungling Practice Is Joined to Absurd Theory: Doctors, Philosophers, and the Right to Die. In Set No Limits: A Rebuttal to Daniel Callahan's Proposal to Limit Health Care for the Elderly, ed. Robert L. Barry and Gerard V. Bradley, pp. 31-44. Urbana: University of Illinois Press, 1991.Arnason, Vilhjalmur. Towards Authentic Conversations: Authenticity in the Patient-Professional Relationship. Theoretical Medicine 15 (3): 227-42, September 1994.Arras, John D. Getting Down to Cases: The Revival of Casuistry in Bioethics. Journal of Medicine and Philosophy 16 (1): 29-51, February 1991.Arras, John D. Principles and Particularity: The Role of Cases in Bioethics. Indiana Law Journal 69 (4): 983-1014, Fall 1994.Beauchamp, Tom L. Principles and Other Emerging Paradigms in Bioethics. Indiana Law Journal 69 (4): 955-71, Fall 1994.Beauchamp, Tom L. The Principles Approach. Hastings Center Report 23 (6): S9, November-December 1993.Beauchamp, Tom L., and Childress, [End Page 279] James F. Principles of Biomedical Ethics. 4th ed. New York: Oxford University Press, 1994. 752 p.Beauchamp, Tom L., and Walters, LeRoy. Ethical Theory and Bioethics. In their Contemporary Issues in Bioethics. 4th ed., pp. 1-38. Belmont, CA: Wadsworth, 1994.Beldecos, Athena, and Arnold, Robert M. Gathering Information and Casuistic Analysis. [Commentary]. Journal of Clinical Ethics 4 (3): 241-45, Fall 1993.Bole, Thomas J. The Rhetoric of Rights and Justice in Health Care. In Rights to Health Care, ed. Thomas J. Bole and William B. Bondeson, pp. 1-19. Boston: Kluwer Academic, 1991.Broome, John. Fairness Versus Doing the Most Good. [Commentary]. Hastings Center Report 24 (4): 36-39, July-August 1994.Campbell, Courtney S. Gifts and Caring Duties in Medicine. In Duties to Others, ed. Courtney S. Campbell and B. Andrew Lustig, pp. 181-97. Boston: Kluwer Academic, 1994.Carson, Ronald A.; Callahan, Sidney; Ross, Judith Wilson; and May, William F. Spirit, Emotion, and Meaning: The Many Voices of Bioethics. Hastings Center Report 24 (3): 26-27, May-June 1994.Charlesworth, Max. Bioethics in a Liberal Society. New York: Cambridge University Press, 1993. 172 p.Cherbas, Peter. Paradigms and Our Shrinking Bioethics. Indiana Law Journal 69 (4): 1105-13, Fall 1994.Childress, James F. Ethical Theories, Principles, and Casuistry in Bioethics: An Interpretation and Defense of Principlism. In Religious Methods and Resources in Bioethics, ed. Paul F. Camenisch, pp. 181-201. Boston: Kluwer Academic, 1994.Childress, James F., and Fletcher, John C. Individualism and Community: The Contested Terrain of Respect for Autonomy. Hastings Center Report 24 (3): 34-35, May-June 1994.Clouser, K. Danner, and Gert, Bernard. A Critique of Principlism. Journal of Medicine and Philosophy 15 (2): 219-36, April 1990.Devettere, Raymond J. Clinical Ethics and Happiness. Journal of Medicine and Philosophy 18 (1): 71-89, February 1993.DeGrazia, David. Moving Forward in Bioethical Theory: Theories, Cases, and Specified Principlism. Journal of Medicine and Philosophy 17 (5): 511-39, October 1992.Donnelly, William J. From Principles to Principals: The New Direction in Medical Ethics. [Commentary]. Theoretical Medicine 15 (2): 141-48, June 1994.Downie, Robin. Health Care Ethics and Casuistry. [Editorial]. Journal of Medical Ethics 18 (2): 61-62, 66, June 1992. [End Page 280]DuBose, Edwin R.; Hamel, Ronald P.; and O'Connell, Laurence J., eds. A Matter of Principles? Ferment in U.S. Bioethics. Valley Forge, PA: Trinity Press International, 1994. 381 p.Fox, Renée C. The Entry of U.S. Bioethics into the 1990s: A Sociological Analysis, pp. 21-71.Gudorf, Christine E. A Feminist Critique of Biomedical Principlism, pp.164-81.Campbell, Courtney S. Principlism and Religion: The Law and the Prophets, pp. 182-208.Charon, Rita. Narrative Contributions to Medical Ethics: Recognition, Formulation, Interpretation, and Validation... (shrink)

The relationship between sociology and bioethics has been an uneasy one. It has been described as contentious and adversarial, and at least some of the sociologists who have ventured into the territory of medical ethics report back on unfriendly natives. This bioethical ill will toward sociology is not without cause. Sociologists have been quite critical of what they call (with not-so-subtle pejorative overtones) the bioethical project.Two decades ago - when bioethics was just getting up on its organizational feet - Renée (...) Fox and Judith Swazey leveled the charge of cultural myopia against bioethics, noting that this myopia generally manifests itself in the form of systematic inattention to the social and cultural sources and implications of its own thought. They go on to sayifbioethics is an indicator of the general state of American ideas, values, and beliefs, of our collective self knowledge, and our understanding of other societies and cultures - then there is every reason to be worried about who we are, what we have become, and where we are going. (shrink)

In this comprehensive study, Marvin Fox offers an approach to Moses Maimonides that illuminates the intersections of his philosophical, religious, and Jewish visions—ideas that have embattled readers of Maimonides since the twelfth century.

Moral theory -- Abortion -- Genetic engineering, cloning, and stem cell research -- Euthanasia and assisted suicide -- The death penalty -- Drug and alcohol use -- Sexual intimacy and marriage -- Feminism, motherhood, and the workplace -- Freedom of speech -- Racial discrimination and global justice.

Contemporary bioethics has evolved over the past 40 years predominantly as a “Western” construct drawing fundamental inspiration for its conceptual and methodological frameworks from secular, Anglo-American philosophical traditions. American bioethicists can be credited with playing a defining role in the globalization of this new discipline to the developing countries of the world, but in this process, in the words of LaFleur, “Bioethics has become international without becoming internationalized.” Among the criticisms leveled against the dominant American model of bioethics is that (...) in its focus on universalism it ignores local cultural and religious influences that are vital to the comprehension of the moral life in many societies. Medical sociologist Renée C. Fox and historian Judith P. Swazey have termed this as a form of “cultural myopia.”. (shrink)

The relationship between sociology and bioethics has been an uneasy one. It has been described as contentious and adversarial, and at least some of the sociologists who have ventured into the territory of medical ethics report back on unfriendly natives. This bioethical ill will toward sociology is not without cause. Sociologists have been quite critical of what they call the bioethical project. Two decades ago - when bioethics was just getting up on its organizational feet - Renée Fox and (...) class='Hi'>Judith Swazey leveled the charge of cultural myopia against bioethics, noting that this myopia generally manifests itself in the form of systematic inattention to the social and cultural sources and implications of its own thought. They go on to say ifbioethics is an indicator of the general state of American ideas, values, and beliefs, of our collective self knowledge, and our understanding of other societies and cultures - then there is every reason to be worried about who we are, what we have become, and where we are going. (shrink)

7. The rights of immigrants: Joseph H. Carens.

Since the early 1970s, Marcel Mauss’s Essai sur le Don, translated into English as The Gift in 1954, has been a standard reference in the social science and bioethical literature on the use of human body parts and substances for medical and research purposes. At that time, three social scientists—political scientist Richard Titmuss in the United Kingdom and sociologist Renée C. Fox working with historian Judith Swazey in the United States—had the idea of using this concept to highlight the (...) fundamental structure of the biomedical practices they were studying, respectively, blood donation, and hemodialysis and organ transplantation. The fact that these first applications of Mauss’s essay should emerge in English- rather than in French-speaking countries raises the question of what the translation of the essay, and notably of the word don as gift, may have to do with this fact. Reading Mauss in translation undoubtedly inspired a seminal approach to interpreting medical and research practices based on bodily giving. This article posits that something may have also been lost: a much broader concept of giving with unquestionable links to the Durkheimian concept of solidarity, which Mauss conceptualizes not only as an obligation but also as a liberty to give. (shrink)

This essay explores how the authors’ curatorial process has roots in _wonder_: how it is one of inquiry, beginning and ending with open questions. The authors describe how their “crip” curatorial methods can be used to refuse extractive practices that might result from a disengaged wonder and to generate exhibitions that hold both the viewers and the artists with the care necessary to move passive viewing into a reciprocal engagement that can lead to an activist turn. These curatorial methods acknowledge (...) and embrace medical professionals as potentially fellow disabled people and view them as current or potential allies. Through the participatory nature of the art in the exhibitions, the gallery becomes a space of encounter, one that creates support structures for people to build out from their individual, personal experiences and to become part of something shared across people, objects, memory, and experience. However, this shared space is not intended to collapse into ever fully knowing or understanding another person’s experience. Critically, it is also a shared engagement where access to someone else’s story, or body, or memories is not freely granted. Crip curation takes seriously the intentional omissions of both viewers and artists that upend not only what we get to know but how we get to know it and emphasizes that what we get to know and how we know it necessarily remains incomplete; viewers and artists alone retain full access to their own experiences. (shrink)

According to usage‐based approaches to language acquisition, linguistic knowledge is represented in the form of constructions—form‐meaning pairings—at multiple levels of abstraction and complexity. The emergence of syntactic knowledge is assumed to be a result of the gradual abstraction of lexically specific and item‐based linguistic knowledge. In this article, we explore how the gradual emergence of a network consisting of constructions at varying degrees of complexity can be modeled computationally. Linguistic knowledge is learned by observing natural language utterances in an ambiguous (...) context. To determine meanings of constructions starting from ambiguous contexts, we rely on the principle of cross‐situational learning. While this mechanism has been implemented in several computational models, these models typically focus on learning mappings between words and referents. In contrast, in our model, we show how cross‐situational learning can be applied consistently to learn correspondences between form and meaning beyond such simple correspondences. (shrink)