Patients have received experimental pharmaceuticals outside of clinical trials for decades. There are no industry-wide best practices, and many companies that have granted compassionate use, or ‘preapproval’, access to their investigational products have done so without fanfare and without divulging the process or grounds on which decisions were made. The number of compassionate use requests has increased over time. Driving the demand are new treatments for serious unmet medical needs; patient advocacy groups pressing for access to emerging treatments; internet platforms (...) enabling broad awareness of compelling cases or novel drugs and a lack of trust among some that the pharmaceutical industry and/or the FDA have patients’ best interests in mind. High-profile cases in the media have highlighted the gap between patient expectations for compassionate use and company utilisation of fair processes to adjudicate requests. With many pharmaceutical manufacturers, patient groups, healthcare providers and policy analysts unhappy with the inequities of the status quo, fairer and more ethical management of compassionate use requests was needed. This paper reports on a novel collaboration between a pharmaceutical company and an academic medical ethics department that led to the formation of the Compassionate Use Advisory Committee. Comprising medical experts, bioethicists and patient representatives, CompAC established an ethical framework for the allocation of a scarce investigational oncology agent to single patients requesting non-trial access. This is the first account of how the committee was formed and how it built an ethical framework and put it into practice. (shrink)

In this interesting and engaging book, Shabel offers an interpretation of Kant's philosophy of mathematics as expressed in his critical writings. Shabel's analysis is based on the insight that Kant's philosophical standpoint on mathematics cannot be understood without an investigation into his perception of mathematical practice in the seventeenth and eighteenth centuries. She aims to illuminate Kant's theory of the construction of concepts in pure intuition—the basis for his conclusion that mathematical knowledge is synthetic a priori. She does this through (...) a contextualized interpretation of his notion of mathematical construction, which she argues can be approached by looking at Euclid's Elements and Christian Wolff's mathematical textbooks. The importance of the former for her interpretation is justified by the fact that nearly all of Kant's mathematical examples in the Critique are Euclidean propositions. The importance of the latter is revealed through the fact that Wolff's textbooks were not only widely read and representative of the state of elementary mathematics during Kant's time; Kant was also intimately familiar with them. During the thirty years prior to the publication of the Critique, he used the textbooks in the college-level introductory courses in mathematics and physics that he taught.In the introduction to her book, Shabel helpfully distinguishes her approach to Kant's philosophy of mathematics from that of previous commentators. She points out that most commentators assessed Kant's thoughts on mathematics in terms of the ‘supposedly devastating effects of the discovery of non-Euclidean geometry on his theory of space’.1 Bertrand Russell, for example, criticized Kant for his lack of a proper …. (shrink)

Motivated by a conviction that mass incarceration and state execution are among the most important ethical and political problems of our time, the contributors to this volume come together from a diverse range of backgrounds to analyze, critique, and envision alternatives to the injustices of the U.S. prison system, with recourse to deconstruction, phenomenology, critical race theory, feminism, queer theory, and disability studies. They engage with the hyper-incarceration of people of color, the incomplete abolition of slavery, the exploitation of prisoners (...) as workers and as "raw material" for the prison industrial complex, the intensive confinement of prisoners in supermax units, and the complexities of capital punishment in an age of abolition. -/- Contents -/- Introduction: Death and Other Penalties Geoffrey Adelsberg, Lisa Guenther, and Scott Zeman -/- Part I. Legacies of Slavery -/- Excavating the Sedimentations of Slavery: The Unfinished Project of American Abolition Brady Heiner -/- From Commodity Fetishism to Prison Fetishism: Slavery, Convict-leasing, and the Ideological Productions of Incarceration James Manos -/- Maroon Philosophy: An Interview with Russell Maroon Shoatz Russell Maroon Shoatz -/- Part II. Death Penalties -/- In Reality-from the Row Derrick Quintero -/- Inheritances of the Death Penalty: American Racism and Derrida's Theologico-Political Sovereignty Geoffrey Adelsberg -/- Making Death a Penalty: Or, Making "Good" Death a "Good" Penalty Kelly Oliver -/- Death Penalty Abolition in Neoliberal Times: The SAFE California Act and the Nexus of Savings and Security Andrew Dilts -/- On the Inviolability of Human Life Julia Kristeva (translated by Lisa Walsh) -/- Part III. Rethinking Power and Responsibility -/- Punishment, Desert, and Equality: A Levinasian Analysis Benjamin S. Yost -/- Prisons and Palliative Politics Ami Harbin -/- Sovereignty, Community, and the Incarceration of Immigrants Matt S. Whitt -/- Without the Right to Exist: Mass Incarceration and National Security Andrea Smith -/- Prison Abolition and a Culture of Sexual Difference Sarah Tyson -/- Part IV. Isolation and Resistance -/- Statement on Solitary Confinement Abu Ali Abdur'Rahman -/- The Violence of the Supermax: Toward a Phenomenological Aesthetics of Prison Space Adrian Switzer -/- Prison and the Subject of Resistance: A Levinasian Inquiry Shokoufeh Sakhi -/- Critical Theory, Queer Resistance, and the Ends of Capture Liat Ben-Moshe, Che Gossett, Nick Mitchell, and Eric A. Stanley. (shrink)

Peter Abelard (1079–1142 ce) was the most wide‐ranging philosopher of the twelfth century. He quickly established himself as a leading teacher of logic in and near Paris shortly after 1100. After his affair with Heloise, and his subsequent castration, Abelard became a monk, but he returned to teaching in the Paris schools until 1140, when his work was condemned by a Church Council at Sens. His logical writings were based around discussion of the “Old Logic”: Porphyry's Isagoge, aristotle'S Categories and (...) On Interpretation and boethius'S textbook on topical inference. They comprise a freestanding Dialectica (“Logic”; probably c.1116), a set of commentaries (known as the Logica [Ingredientibus], c. 1119) and a later (c. 1125) commentary on the Isagoge (Logica Nostrorum Petititoni Sociorum or Glossulae). In a work Abelard called his Theologia, issued in three main versions (between 1120 and c.1134), he attempted a logical analysis of trinitarian relations and explored the philosophical problems surrounding God's claims to omnipotence and omniscience. The Collationes (“Debates,” also known as “Dialogue between a Christian, a Philosopher and a Jew”; probably c.1130) present a rational investigation into the nature of the highest good, in which the Christian and the Philosopher (who seems to be modeled on a philosopher of pagan antiquity) are remarkably in agreement. The unfinished Scito teipsum (“Know thyself,” also known as the “Ethics”; c.1138) analyses moral action. (shrink)

Prevailing views of delusional beliefs frame them as pathological and harmful, leaving little room for understanding why delusions may emerge. Lisa Bortolotti’s book, “Why Delusions Matter,” offers a more compassionate perspective on delusions, framing them as adaptive and meaningful responses to crises. Many psychologists and philosophers have asserted that delusions can function as psychological defense mechanisms or adaptive coping strategies that protectively obscure painful realities. However, some delusions, especially those that arise in the context of traumatic experiences and psychosis, (...) can be better understood as the body’s attempt to alert us to sources of harm and reveal, rather than obscure, important information. Drawing from neuroscience literature and the author’s personal encounters with psychosis and trauma, this article explores the ways in which some delusions can help us access interoceptive information from the body, uncovering sources of pathology, as well as previously unconscious information about harmful traumatic experiences. Ultimately, taking an epistemic justice lens to delusions, uplifts their value in revealing very real embodied experiences of the individual expressing them. (shrink)

This volume presents cutting-edge theory and research on emotions as constructed events rather than fixed, essential entities. It provides a thorough introduction to the assumptions, hypotheses, and scientific methods that embody psychological constructionist approaches. Leading scholars examine the neurobiological, cognitive/perceptual, and social processes that give rise to the experiences Western cultures call sadness, anger, fear, and so on. The book explores such compelling questions as how the brain creates emotional experiences, whether the "ingredients" of emotions also give rise to other (...) mental states, and how to define what is or is not an emotion. Introductory and concluding chapters by the editors identify key themes and controversies and compare psychological construction to other theories of emotion. (shrink)

This paper illustrates a role that bioethics should play in developing and criticizing protocols for breast cancer genetic screening. It demonstrates how a critical bioethics, using approaches and reflecting concerns of contemporary philosophy of science and science studies, may critically interrogate the normative and conceptual schemes within which ethical considerations about such screening protocols are framed. By exploring various factors that influence the development of such protocols, including politics, cultural norms, and conceptions of disease, this paper and the critical bioethics' (...) approach it endorses illuminate and critically assess some of the competing worldviews informing protocol development. One of the frequently neglected worldviews in traditional bioethics' treatment of protocols concerning breast care is constituted by women's own views of their breasts and breast cancer, both within the technologically-oriented social practice of American medicine and in light of the social construction of their breasted experience in American society. This paper attempts to redress and critically assess this neglect on the part of traditional bioethics. Finally, in contrast to traditional bioethics, critical bioethics critically interrogates its own normative and conceptual commitments. In this final capacity, a critical bioethics' approach makes a valuable contribution to the evolution of bioethics. (shrink)

Levinas’s Humanism of the Other may be seen as a meditation of King Lear. His philosophy offers what a critique of traditional and modern anti-humanism urgently needs: an ethics that precedes being. It provides a necessary ethical foundation needed to investigate questions of the human and humanity that Shakespeare examines so thoroughly in this powerful tragedy. Prefiguring Levinas’s later philosophy, Shakespeare dramatizes this humanism of the other through the suffering and vulnerability of the body. Lear’s and Gloucester’s parallel journeys are (...) both grounded in this vulnerability of the body and fragility of the mind that lead them to a humanism of the other. Moreover, the ethical good that precedes ontology, the saying, is profoundly staged through the characters of Cordelia and Edgar. This vision of King Lear, therefore, underlies and informs Levinas’s radical critique of traditional humanism and contemporary anti-humanism in his insistence on a humanism of the other. (shrink)

Rhetorical argumentation is a craft: collective, processual, and circulating, and it partakes in the indeterminate evolution of public norms. Official apologies can illustrate how rhetorical modalities over time can reflect change in civic sensibilities and effect collective moral reflection and evolution. Rhetorical citizenship, understood as encompassing both critical production and reception of publicly circulating arguments, is a way of conceptualizing the interaction between the individual and the collective in the ongoing discursive formation of the community and the norms that inform (...) it. (shrink)

A key motivation for Universal Grammar (UG) is developmental: UG can help children acquire the linguistic knowledge that they do as quickly as they do from the data that's available to them. Some of the most fruitful recent work in language acquisition has combined ideas about different hypothesis space building blocks with domain‐general statistical learning. Statistical learning can then provide a way to help navigate the hypothesis space in order to converge on the correct hypothesis. Reinforcement learning is a principled (...) way to update the probability of a categorical option that's in competition with other categorical options. There are two prominent options for linking theory theoretical representations: the Uniformity of Theta Assignment Hypothesis (UTAH) and the relativized form of that theory, relativized UTAH. The learning strategy of Pearl and Sprouse shares the intuition with subjacency that there's a local structural anomaly when syntactic islands occur. (shrink)

Humans routinely transmit and interpret subtle information about their mental states through the language they use, even when only the language text is available. This suggests humans can utilize the linguistic signature of a mental state, comprised of features in the text. Once the relevant features are identified, mindprints can be used to automatically identify mental states communicated via language. We focus on the mindprints of eight mental states resulting from intentions, attitudes, and emotions, and present a mindprint-based machine learning (...) technique to automatically identify these mental states in realistic language data. By using linguistic features that leverage available semantic, syntactic, and valence information, our approach achieves near-human performance on average and even exceeds human performance on occasion. Given this, we believe mindprints could be very valuable for intelligent systems interacting linguistically with humans. Keywords: mental state; linguistic features; mindprint; natural language processing; information extraction. (shrink)

In April 1992 the Food and Drug Administration (FDA) announced it was restricting the availability of silicone gel-filled breast implants to women enrolled in clinical trials. All candidates for breast reconstruction, but only a "very limited" number of augmentation candidates, would have access to the implants. This policy has been criticized as paternalistic, sexist, and unjustified by scientific data. I examine these charges and conclude that controversy surrounding the scientific data weakens the FDA's paternalistic mandate and that its policy of (...) treating reconstruction and augmentation candidates differently results in increased social injustice and perpetuates cultural biases concerning female beauty and women's rights to control their bodies. I also argue that these cultural biases shape women's subjective experience of their physical selves and should not, contrary to some feminist arguments, be viewed as precluding their giving informed consent to breast surgery. (shrink)

ABSTRACT A recent issue of the journal Design and Culture included Lucy Kimbell's interview of object-oriented ontology philosopher Graham Harman. The invitation was premised on Harman's ability to counter the contemporary focus on user-centered design with an object orientation. Harman's appearance in the world of design discourse presents a paradox. To ask what object-oriented ontology that explicitly rejects anthropocentrism can offer user-centered and decidedly anthropocentric design practice seems to miss the point of an object orientation. An answer to the paradox (...) may reside in Ian Bogost's account of the metaphorism of object-oriented ontology. This essay explores Bogost's Alien Phenomenology, or What It's like to Be a Thing, which uses Harman's metaphor of black noise as “the background noise of peripheral objects,” and considers the design implications of Bogost's call to amplify black noise and linger in the speculative fiction of things, such as roasted green chile peppers, udon noodles, and pound cake. (shrink)

The possibility of genetic enhancement to increase the likelihood of success in sport and life’s prospects raises questions for accounts of sport and theories of justice. These questions obviously include the fairness of such enhancement and its relationship to the goals of sport and demands of justice. Of equal interest, however, is the effect on our understanding of individual effort, merit, and desert of either discovering genetic contributions to components of such effort or recognizing the influence of social factors on (...) the development and exercise of individual effort. This paper analyzes arguments about genetic enhancement with the goal of raising questions about how sport and justice regard unchosen, undeserved inequalities and what is assumed to be their opposite—namely, the exercise and results of individual effort. It is suggested that contemplating enhancement of natural assets previously outside human control may reinforce recognition of responsibility to intervene with regard to social advantages so as to support individual effort and improve individuals’ life prospects. (shrink)

This paper argues against considering incidental fndings as potential benefts of research when assessing the social value of proposed research, determining the appropriateness of a study's risk/beneft ratio, and identifying and disclosing the risks and benefts of participation during informed consent. The possibility of generating IFs should be disclosed during informed consent as neither a risk nor beneft, but as a possible outcome collateral to participation. Whether specifc IFs will be disclosed when identifed is a separate question whose answer is (...) material to determining whether IFs constitute a risk or a potential indirect beneft of participation. Finally, three types of IF should be distinguished and treated diferently during informed consent: those that will be routinely generated , those that can reasonably be characterized in terms of their nature and frequency of generation , and those of unpredictable nature and frequency that can be characterized only in general terms. Research protocols should provide a rationale for sharing or not sharing IFs of these three types with participants. Regulatory review of such plans should not, however, be confused with regarding IFs as potential benefts when assessing the study's risk/beneft ratio or merit. (shrink)

ObjectiveTo apply a socioecological approach to identify risk and protective factors across levels of the “sports-ecosystem,” which are associated with mental health outcomes among athletes in para-sports and non-para sports. A further aim is to determine whether para athletes have unique risks and protective factor profiles compared to non-para athletes.MethodsA cross-sectional, anonymous online-survey was provided to all categorized athletes aged 16 years and older, registered with the Australian Institute of Sport. Mental health outcomes included mental health symptoms, general psychological distress, (...) risky alcohol consumption and eating disorder risk. Risk and protective factors across multiple levels of the socioecological model, including individual, microsystem, exosystem and macrosystem level factors were assessed via self-report.ResultsA total of 427 elite athletes participated in the study. No significant differences in the rates of mental health problems were observed between para and non-para athletes. Both differences and similarities in risk and protective factor profiles were found across the multiple levels of the sports-ecosystem. Weak evidence was also found to support the hypothesis that certain risk factors, including experiencing two or more adverse life events in the past year, sports related concussion, high self-stigma, inadequate social support and low psychological safety conferred a greater risk for poorer mental health outcomes for para athletes in particular.ConclusionRisk factors occurring across various levels of the sports ecosystem, including individual, interpersonal and organizational level risk factors were found to be associated with a range of poorer mental health outcomes. The association between mental ill-health and certain risk factors, particularly those at the individual and microsystem level, appear to be greater for para athletes. These findings have important implications for policy and mental health service provision in elite sports settings, highlighting the need for more nuanced approaches to subpopulations, and the delivery of mental health interventions across all levels of the sports ecosystem. (shrink)

Depression is often diagnosed in patients nearing the end of their lives and medication or psychotherapy is prescribed. In many cases this is appropriate. However, it is widely agreed that a health care professional should treat sick persons so as to improve their condition as they define improvement. This raises questions about the contexts in which treatment of depression in late life is appropriate. This article reviews a problematic case concerning the appropriateness of treatment in light of the literature in (...) bioethics. Specific attention is paid to the concept of authenticity and the role of suffering. Suffering is often the result of a situation in which one's self is damaged. In some circumstances, this suffering should not be seen as a symptom of illness but as a reflection, in a difficult life context, of the individual's authentic nature. Assessment of depression in the elderly must go beyond a symptom list and must consider both the context of the individual's situation and his or her authentic self. When the symptoms reflect the individual's assessment of the situation in the context of the authentic self, they may be "appropriate." However, even when the symptoms are appropriate, if they interfere with life assessment and adjustment, treatment should be considered. (shrink)

In this interesting and engaging book, Shabel offers an interpretation of Kant's philosophy of mathematics as expressed in his critical writings. Shabel's analysis is based on the insight that Kant's philosophical standpoint on mathematics cannot be understood without an investigation into his perception of mathematical practice in the seventeenth and eighteenth centuries. She aims to illuminate Kant's theory of the construction of concepts in pure intuition—the basis for his conclusion that mathematical knowledge is synthetic a priori. She does this through (...) a contextualized interpretation of his notion of mathematical construction, which she argues can be approached by looking at Euclid's Elements and Christian Wolff's mathematical textbooks. The importance of the former for her interpretation is justified by the fact that nearly all of Kant's mathematical examples in the Critique are Euclidean propositions. The importance of the latter is revealed through the fact that Wolff's textbooks were not only widely read and representative of the state of elementary mathematics during Kant's time; Kant was also intimately familiar with them. During the thirty years prior to the publication of the Critique, he used the textbooks in the college-level introductory courses in mathematics and physics that he taught.In the introduction to her book, Shabel helpfully distinguishes her approach to Kant's philosophy of mathematics from that of previous commentators. She points out that most commentators assessed Kant's thoughts on mathematics in terms of the ‘supposedly devastating effects of the discovery of non-Euclidean geometry on his theory of space’ .1 Bertrand Russell, for example, criticized Kant for his lack of a proper …. (shrink)

Candidate evaluation for breast implantation presents a more important obstacle to the fulfillment of the normative requirements of informed consent than do the social roles of women or cultural norms governing female beauty. I argue that women's decisions to receive breast implants may indeed be informed, competently made, and substantially voluntary, but that the cultural construction of beauty may undermine women's autonomy by influencing the evaluation of surgical candidates and risk disclosure during informed consent.

Rebecca Skloot, The Immortal Life of Henrietta Lacks, New York: Crown Publishers, 2010, reviewed by Lisa S. Parker.

Personalized medicine with its promise of developing interventions tailored to an individual's health need and genetically related response to treatment might seem a promising antidote to the documented underutilization of standard depression treatments by African Americans. In addition, understanding depression not merely in biochemical terms but also in genetic terms might seem to counter cultural beliefs and stigma that attach to depression when conceived as a mood or behavioral problem under an individual's control. After all, if there is one thing (...) for which a person is not responsible and cannot be blamed, it is her genes. Nevertheless, for multiple reasons, a personalized medical approach to depression treatment, and its attendant conceptualization of depression and treatment response as genetically influenced, present the risk of exacerbating well-documented disparities in access to, and utilization of, treatment for depression among African-American and Caucasian elderly adults. (shrink)

Two potentially lifesaving protocols, emergency preservation and resuscitation and uncontrolled donation after circulatory determination of death, currently implemented in some U.S. emergency departments, have similar eligibility criteria and initial technical procedures, but critically different goals. Both follow unsuccessful cardiopulmonary resuscitation and induce hypothermia to “buy time”: one in trauma patients suffering cardiac arrest, to enable surgical repair, and the other in patients who unexpectedly die in the ED, to enable organ donation. This article argues that to fulfill patient-focused fiduciary obligations (...) and maintain community trust, institutions implementing both protocols should adopt and publicize policies to guide ED physicians to utilize either protocol for particular patients, in order to address the appearance of conflict of interest arising from the protocols' similarities. It concludes by analyzing ethical implications of incentives that may influence institutions to develop the expertise required for uDCDD but not EPR. (shrink)

Individual and institutional conflicts of interest arise with increasing frequency and negative sequelae as universities and their principals, as well as individual faculty members, engage in research with support from profit/not-for-profit entities. This essay examines how institutional and individual conflicts of interest arise for ethics centers and their faculty/staff, respectively. It defines COI, endorses a reasonable person standard for determining when COI exist, and considers problems that arise when disclosure of COI is embraced as a remedy for them. It argues (...) that transparency and disclosure are generally inadequate measures to address COI, especially those of ethics centers. It concludes by sketching other measures that may be ingredients in attempts to avoid, manage, or mitigate the COI of ethics centers and their faculty/staff. (shrink)

Employing the National Institute of Mental Health-funded Prevention of Suicide in Primary Care Elderly Collaborative Trial as a case study, we discuss 2 sets of ethical issues: obtaining informed consent for a clinic-based intervention study and using treatment as usual (TAU) as the control condition. We then address these ethical issues in the context of the debate about the quality improvement efforts of health care organizations. Our analysis reveals the tension between ethics and scientific integrity involved with using TAU as (...) a control condition and the difficulty in designing high-quality research in a community-based setting. (shrink)

Implementation of guidelines regarding breaches of electronic health information requires an anticipatory stance and physician and patient education regarding security and monitoring measures and methods of redress. Adopting a preventive ethics, rather than a crisis management, model may also increase physician awareness of how the information they choose to include and privilege within the health record may expose patients to added harms if not done mindfully.

Employing the National Institute of Mental Health-funded Prevention of Suicide in Primary Care Elderly Collaborative Trial as a case study, we discuss 2 sets of ethical issues: obtaining informed consent for a clinic-based intervention study and using treatment as usual (TAU) as the control condition. We then address these ethical issues in the context of the debate about the quality improvement efforts of health care organizations. Our analysis reveals the tension between ethics and scientific integrity involved with using TAU as (...) a control condition and the difficulty in designing high-quality research in a community-based setting. (shrink)

ABSTRACT:Drawing on insights from feminist epistemology and experience in genomics-related bioethics research, this essay offers three suggestions that may enable bioethics to contribute more persuasively to urgent issues affecting the health and well-being of individuals, communities, and the world they inhabit. First, it suggests that bioethics pay more attention to people's feelings, particularly those that help constitute their self-identities, and to the role of those feelings in their health-relevant behaviors. Further, it proposes conceiving of health-relevant behaviors expansively. Second, it suggests (...) that bioethics advocate for a longer time horizon for the conduct of empirical bioethics research and other types of research addressing complex, systemic factors influencing health. Third, it suggests that bioethics play a larger role in illuminating and applauding the evolving nature of scientific knowledge. (shrink)

In late December 1998, Renada Daniel-Patterson's father offered to donate a kidney to his daughter and ignited a controversy in the bioethics community. Renada had been born with only one kidney, which began to fail early in her childhood. At age 6, Renada had to receive dialysis three times a week. She was unable to attend school or venture very far from home. This pattern continued until Renada was 13, when Mr. Patterson called from prison to offer her his kidney. (...) Renada was surprised to hear from her father, who was serving 12 years at California State Prison for burglary and drug convictions. Mr. Patterson was determined to be a compatible donor, and the family proceeded with the transplant operation. As a result of this surgery, Renada was able to live the life of a healthy girl for 2 years. Because the medication to prevent rejection of the transplanted organ made her feel ill and bloated and caused her to develop a hump on her back, Renada gradually began to skip doses. As a result, her donated kidney began to fail. It was under these circumstances that David Patterson offered to donate his second kidney to his daughter in 1998. (shrink)

Measuring outcomes using quantitative analytic methods is the hallmark of scientific research in healthcare. For clinical ethics support services (CESS), tangible outcome metrics are lacking and literature examining CESS quality is limited to evaluation of single cases or the influence on individual healthcare professional’s perceptions or behaviour. This represents an enormous barrier to implementing and evaluating ethics initiatives to improve quality. In this context, Kok _et al_ propose a theoretical framework for how moral case deliberation (MCD) can drive quality at (...) an organisational-level, termed _morisprudence_ 1. By offering mechanistic insights into how MCD can lead to organisational learning and quality improvement (QI), they provide a roadmap for actionable items to measure quality. As conceptualised, _morisprudence_ follows accumulation of organisational practical wisdom from a repertoire of ‘paradigmatic’ MCDs, aiding identification of patterns of morally important features. Here, there are parallels between healthcare professionals’ clinical judgement, where past experience... (shrink)

Despite having paved the way for face, womb and penis transplants, hand transplantation today remains a small hybrid of reconstructive microsurgery and transplant immunology. An exceptionally limited patient population internationally complicates medical researchers’ efforts to parse outcomes “objectively.” Presumed functional and psychosocial benefits of gaining a transplant hand must be weighed in both patient decisions and bioethical discussions against the difficulty of adhering to post-transplant medications, the physical demands of hand transplant recovery on the patient, and the serious long-term health (...) risks of immunosuppressant drugs. This paper relates five narratives of hand transplantation drawn from an oral history project to show how narrative methods can and should inform ethical evaluations and the clinical process of hand transplantation. The interviews with patients and their partners analyzed here lead us to suggest that qualitative accounts of patient experiences should be used to complement clinical case studies reported in medical journals and to help develop instruments to assess outcomes more systematically. (shrink)

No consensus yet exists on how to handle incidental fnd-ings in human subjects research. Yet empirical studies document IFs in a wide range of research studies, where IFs are fndings beyond the aims of the study that are of potential health or reproductive importance to the individual research participant. This paper reports recommendations of a two-year project group funded by NIH to study how to manage IFs in genetic and genomic research, as well as imaging research. We conclude that researchers (...) have an obligation to address the possibility of discovering IFs in their protocol and communications with the IRB, and in their consent forms and communications with research participants. Researchers should establish a pathway for handling IFs and communicate that to the IRB and research participants. We recommend a pathway and categorize IFs into those that must be disclosed to research participants, those that may be disclosed, and those that should not be disclosed. (shrink)

Volume 20, Issue 7, July 2020, Page 77-80.