BackgroundHIV cure research involving cell and gene therapy has intensified in recent years. There is a growing need to identify ethical standards and safeguards to ensure cell and gene therapy (CGT) HIV cure research remains valued and acceptable to as many stakeholders as possible as it advances on a global scale.MethodsTo elicit preliminary ethical and practical considerations to guide CGT HIV cure research, we implemented a qualitative, in-depth interview study with three key stakeholder groups in the United States: (1) biomedical (...) HIV cure researchers, (2) bioethicists, and (3) community stakeholders. Interviews permitted evaluation of informants’ perspectives on how CGT HIV cure research should ethically occur, and were transcribed verbatim. We applied conventional content analysis focused on inductive reasoning to analyze the rich qualitative data and derive key ethical and practical considerations related to CGT towards an HIV cure.ResultsWe interviewed 13 biomedical researchers, 5 community members, and 1 bioethicist. Informants generated considerations related to: perceived benefits of CGT towards an HIV cure, perceived risks, considerations necessary to ensure an acceptable benefit/risk balance, CGT strategies considered unacceptable, additional ethical considerations, and considerations for first-in-human CGT HIV cure trials. Informants also proposed important safeguards to developing CGT approaches towards an HIV cure, such as the importance of mitigating off-target effects, mitigating risks associated with long-term duration of CGT interventions, and mitigating risks of immune overreactions.ConclusionOur study identified preliminary considerations for CGT-based HIV cure across three key stakeholder groups. Respondents identified an ideal cure strategy as one which would durably control HIV infection, protect the individual from re-acquisition, and eliminate transmission to others. Known and unknown risks should be anticipated and perceived as learning opportunities to preserve and honor the altruism of participants. Preclinical studies should support these considerations and be transparently reviewed by regulatory experts and peers prior to first-in-human studies. To protect the public trust in CGT HIV cure research, ethical and practical considerations should be periodically revisited and updated as the science continues to evolve. Additional ethics studies are required to expand stakeholder participation to include traditionally marginalized groups and clinical care providers. (shrink)

In this paper I offer an analysis, reconstruction and defense of Locke's account of personal identity. I begin with a detailed analysis of Locke's use of the term 'conscious' in its historical context. This term, which plays a central role in Locke's theory, had senses in the seventeenth century which it does not have today. In the light of this analysis, an interpretation of continuity of consciousness as the ancestral of memory is given. It is argued that this interpretation of (...) Locke's theory of personal identity does not involve an ontological commitment to immaterial substances, and Locke is defended against the historically important criticisms of Butler and Reid. In the conclusion I suggest that the account of the individuation of persons implicit in Locke's discussion of personal identity is similar to the account of contextual individuation given by Hintikka. (shrink)

Our aim in this article is to define the difficulties that clinical ethics services encounter when they are asked to demonstrate the value a clinical ethics service (CES) could and should have for an institution and those it serves. The topic emerged out of numerous related presentations at the Un- Conference hosted by the Cleveland Clinic in August 2018 that identified challenges of articulating the value of clinical ethics work for hospital administrators. After a review these talks, it was apparent (...) that the field of clinical ethics may be at a crisis of sorts due to increased pressure to provide explicit measures to healthcare institutions to concretely demonstrate that CESs make a valuable difference in healthcare delivery. In this article, we grapple with how to satisfy the need for demonstrable value in a field in which metrics alone may not capture the scope of clinical ethics practice. We suggest that capturing the value of a CES has been difficult because the benefits of ethics consultation may be overt or attributable to the CES, but are often hidden due to the systems-level and process-oriented nature of clinical ethics work. Part of the difficulty in demonstrating the value of CESs is capturing and conveying all of the ways the integration of a CES throughout an institution positively affects patients, families, visitors, healthcare professionals, administrators, and the institution itself. Our aim is to (1) elucidate the multifaceted value added by a CES, including value that tends to be hidden and (2) suggest how to demonstrate value to others in a way that is not simplistic or reductionistic. (shrink)

The concept of vulnerability is deployed in bioethics to, amongst other things, identify and remedy harms to participants in research, yet although nonhuman animals in experimentation seem intuitively to be vulnerable, this concept and its attendant protections are rarely applied to research animals. I want to argue, however, that this concept is applicable to nonhuman animals and that a new taxonomy of vulnerability developed in the context of human bioethics can be applied to research animals. This taxonomy does useful explanatory (...) work, helping to pinpoint the limitations of the 3Rs/welfare approach currently adopted in the context of animal experimentation. On this account, the 3Rs/welfare approach fails to deliver for nonhuman animals in experimentation because it effectively addresses only one element of their vulnerability (inherent) and paradoxically through the institution of Animal Ethics Committees intended to protect experimental animals in fact generates new vulnerabilities that exacerbate their already precarious situation. (shrink)

Biobanks are proliferating rapidly worldwide because they are powerful tools and organisational structures for undertaking medical research. By linking samples to data on the health of individuals, it is anticipated that biobanks will be used to explore the relationship between genes, environment and lifestyle for many diseases, as well as the potential of individually-tailored drug treatments based on genetic predisposition. However, they also raise considerable challenges for existing legal frameworks and research governance structures. This book critically examines the current governance (...) structures in place for biobanks in England and Wales. It shows that the technologies, techniques and practices involved in biobanking do not always conform neatly to existing legal principles and frameworks that apply to other areas of medical research. Using a socio-legal approach, including interview data gathered from the scientific community, this book provides unique insights and makes recommendations about appropriate governance mechanisms for biobanking in the future. It also explores the issues around the secondary use of information, such as consent and how to protect privacy, when biobanks are accessed by a number of different third parties. These issues have relevance both within England and Wales and to a wide international audience, as well as for other areas where large datasets are used.--Back cover. (shrink)

This paper presents an ethical approach to the use of lobbying within the context of the relationships among U.S. organizations, their lobbyists, and government officials. After providing a brief history of modern-day lobbying activities, lobbying is defined and described focusing on its role as a strategic marketing tool. Then ethical frameworks for understanding the impact of these practices on various external constituencies are delineated with an emphasis on the communitarian movement advanced by Etzioni. Consistent with the call for "informed advocacy" (...) by Laczniak (1993), the paper closes with an examination of the ethics of specific lobbying activities. (shrink)

The use of genome-wide association studies in medical research and the increased ability to share data give a new twist to some of the perennial ethical issues associated with genomic research. GWAS create particular challenges because they produce fine, detailed, genotype information at high resolution, and the results of more focused studies can potentially be used to determine genetic variation for a wide range of conditions and traits. The information from a GWA scan is derived from DNA that is a (...) powerful personal identifier, and can provide information not just on the individual, but also on the individual's relatives, related groups, and populations. Furthermore, it creates large amounts of individual-specific digital information that is easy to share across international borders. This paper provides an overview of some of the key ethical issues around GWAS: consent, feedback of results, privacy, and the governance of research. Many of the questions that lie ahead of us in terms of the next generation sequencing methods will have been foreshadowed by GWAS and the debates around ethical and policy issues that these have created. (shrink)

History of science has developed into a methodologically diverse discipline, adding greatly to our understanding of the interplay between science, society, and culture. Along the way, one original impetus for the then newly emerging discipline—what George Sarton called the perspective “from the point of view of the scientist”—dropped out of fashion. This essay shows, by means of several examples, that reclaiming this interaction between science and history of science yields interesting perspectives and new insights for both science and history of (...) science. The authors consequently suggest that historians of science also adopt this perspective as part of their methodological repertoire. (shrink)

The recent escalation of concern about scientific integrity has provoked a larger discussion of many questions about why we do science the way we do, as well as about how we should do it. One of these questions concerns collaboration: who should count as a collaborator? This, in turn, raises the question why collaborators collaborate, and whether and when they should. Here, history offers insights that can illuminate the current debate.

R. S. Peters and a small group of contemporaries set the foundations for analytic philosophy of education in the 1960s, a field which continues to this day. This article asks about the value of analytic philosophy of education today, and proposes alterations to its initial aims and methods to make its value clearer. I outline some critiques of analytic philosophy of education, and respond by clarifying its aims. The key insight is that if analytic philosophy of education is explicitly aligned (...) with recent trends in social philosophy to focus on ameliorative analysis, then its value and relevance as a method in educational studies becomes clearer. Ameliorative analysis starts with the social role that a concept plays, and analyses it with this purpose in mind. I illustrate how R. S. Peters analysis of education would be approached differently with ameliorative analysis in mind, and conclude by pointing to some interesting points of discussion that arise from this approach. (shrink)

A growing volume of research from global data demonstrates that institutional care under conditions of deprivation is profoundly damaging to children, particularly during the critical early years of development. However, how these individuals develop over a life course remains unclear. This study uses data from a survey on the health and development of 420 children mostly under the age of three, placed in 12 infant care institutions between 1958 and 1961 in Zurich, Switzerland. The children exhibited significant delays in cognitive, (...) social, and motor development in the first years of life. Moreover, a follow-up of a subsample of 143 children about 10 years later revealed persistent difficulties, including depression, school related-problems, and stereotypies. Between 2019 and 2021, these formerly institutionalized study participants were located through the Swiss population registry and invited to participate once again in the research project. Now in their early sixties, they are studied for their health, further development, and life-course trajectories. A mixed-methods approach using questionnaires, neuropsychological assessments, and narrative biographical interviews was implemented by a multidisciplinary team. Combining prospective and retrospective data with standardized quantitative and biographical qualitative data allows a rich reconstruction of life histories. The availability of a community sample from the same geographic location, the 1954–1961 cohort of the Zurich Longitudinal Studies, described in detail in a paper in this issue, enables comparison with an unaffected cohort. This article describes the study design and study participants in detail and discusses the potential and limitations of a comparison with a community sample. It outlines a set of challenges and solutions encountered in the process of a lifespan longitudinal study from early childhood into the cusp of old age with a potentially vulnerable sample and summarizes the lessons learned along the way. (shrink)

Prompted by the ever-increasing cesarean rate, this paper considers the interpretive disjunct between two significant strands of feminist analysis that have arisen in the last four decades as a consequence of the phenomenon of medicalized birth. In contrast to the dominant paradigm of bioethical “Principalism,” both modes of analysis, understood as “the critique of industrialized labor” and “the critique of idealized labor,” are attentive to the way in which social discourses inform bioethical deliberation and practice, but significantly diverge in the (...) nature of their accounts. The “industrialization critique” understands the culture of medical intervention to be impelled by an “obstetric desire” to appropriate women's reproductive potency, whereas the “idealization critique” relates new mothers’ “low childbirth satisfaction” to a pernicious normative ideal propagated by the natural childbirth movement. This paper will explore the anatomy of both critiques and interrogate their fidelity to the phenomenological insight of the body as chiasm between material and ideal. I will argue that while the insights of the idealization critique are well grounded, we must exercise caution about the critique's tendency to reductively understand the embodied experience of labor as entirely discursively produced, a gesture that risks re-performing the dematerialization of women often effected through obstetric intervention itself. (shrink)

This case study examines how journalists at Britain's Guardian newspaper and affiliated Web site are assessing and incorporating user-generated content in their perceptions and practices. A framework of existentialism helps highlight constructs and professional norms of interest. It is one of the first data-driven studies to explore how journalists are negotiating personal and social ethics within a digital network.

The phrase “regenerative medicine” is used so often and for so many different things, with such enthusiasm or worry, and often with a sense that this is something radically new. This paper places studies of regeneration and applications in regenerative medicine into historical perspective. In fact, the first stem cell experiment was carried out in 1907, and many important lines of research have contributed since. This paper explores both what we can learn about the history and what we can learn (...) from the history of regenerative medicine research. (shrink)

Anton Dohrn rejected the popular Amphioxus-ascidian theory of vertebrate origin, which saw Amphioxus as the most primitive vertebrate and ascidians as vertebrate ancestors. Instead he argued for the segmented annelids as the more likely candidate. Attacked for being 'unscientific' by such popular morphologists as Carl Gegenbaur and Ernst Haeckel, Dohrn countered with similar accusations. Since the debate peaked as Dohrn was establishing his Stazione Zoologica in Naples at the end of the nineteenth century, it gained him valuable attention and may (...) have encouraged him to retain his view even in the face of new and problematic evidence. This paper explores Dohrn's contributions and the underlying commitments revealing what he regarded as important in science. (shrink)

In this paper we propose a new way of conceptualizing animals in experimentation – the animal-as-patient. Construing and treating animals as patients offers a way of successfully addressing some of the entrenched epistemological and ethical problems within a practice of animal experimentation directed to human clinical benefit. This approach is grounded in an epistemological insight and builds on work with so-called ‘pet models’. It relies upon the occurrence and characterization of analogous human and nonhuman animal diseases, where, if certain criteria (...) of homology and mechanism are met, the animal simultaneously becomes a patient and a spontaneous model of the human disease. (shrink)

Abstract“Development” suggests that there is something that is developing, or changing over time. We can ask about temporal boundaries of that developmental process, asking when development begins or ends and whether it has defined stages along the way, for example. We can ask about spatial boundaries as well: where does the developing object start and end? For this article, I ask about the boundary definition of the developing organism in particular. What is an individual organism, and what defines it as (...) the same organism as it changes over time? In particular, how has this been answered historically: how have researchers described and explained what an individual developing organism is? This article explores ideas and approaches especially starting in the late 19th century, and in particular looks at the role of “organization.”. (shrink)

Talia Welsh (2006) argues that Shaun Gallagher and Andrew Meltzoff's (1996) application of neonatal imitation research is insufficient grounds for their claim that neonates are born with a primitive body image and thus an innate self-awareness. Drawing upon an understanding of the self that is founded upon a ?theory of mind,? Welsh challenges the notion that neonates have the capacity for self-awareness and charges the supposition with an essentialism which threatens to disrupt more social constructionist understandings of the self. In (...) this paper, I initially defend Gallagher and Meltzoff's (1996) application of infant imitation to understandings of neonatal self-awareness by explaining how body image schemas can be understood as non-representational embodied cognitive phenomena that challenge ?theory of mind? theory. I then further develop the claim that neonates are born self-aware with reference to my own work in fetal development. I conclude that Welsh's political concerns are unfounded by showing how the conclusion that a neonate is self-aware does not signal a return to an essentialist understanding of self-awareness, but rather introduces into philosophical and psychological discourse possible alternate understandings of an embodied sense of self that are embedded within intersubjective contexts. (shrink)

In this paper, Tarskis notion of Logical Consequence is viewed as a special case of the more general notion of being a theorem of an axiomatic theory. As was recognized by Tarski, the material adequacy of his definition depends on having the distinction between logical and non logical constants right, but we find Tarskis analysis persuasive even if we dont agree on what constants are logical. This accords with the view put forward in this paper that Tarski indeed captures the (...) more inclusive notion of theoremhood in an axiomatic theory. The approach to logical consequence via axiomatic theories leads us to grant centrality to inference schemas rather than to full-fledged arguments and to view the logically valid schemas as a subclass of generally valid schemas. (shrink)

When discussing the problem of evil, philosophers often distinguish between physical evil (harm caused within the natural world such as natural disasters, disease, and the like), and moral evil (harm caused by human agency). Mapping this traditional distinction is mapped onto the third section of Fichte’s The Vocation of Man would at first seem fairly straightforward: for Fichte, evil arising from nature occurs through “blind mechanism” and is unfree; in contrast, evil done by human beings arises out of free agency. (...) The answer may be more complicated, however, in two different ways. First, Fichte holds that nature is to be cultivated and controlled by human beings so that it is no longer a source of harm; this may imply that the continuing harm done by nature is the result of humans’ failure to have sufficiently tamed nature. In that case, some of the harm caused by nature may be attributable to free human causality and thus no longer be a clearcut instance of natural evil. Second, Fichte repeatedly states that those who fail to act morally and who fail to conform their wills to the moral law are still be in the power of the mechanisms of nature. Even though we must think of them as free, Fichte compares their actions to the operation of nature and its mechanism of necessity. By presenting a careful and nuanced Fichtean account of the traditional distinction between physical and moral evil, we can better appreciate how Fichte understood the meaning and scope of human responsibility. (shrink)

Garland E. Allen’s 1978 biography of the Nobel Prize winning biologist Thomas Hunt Morgan provides an excellent study of the man and his science. Allen presents Morgan as an opportunistic scientist who follows where his observations take him, leading him to his foundational work in Drosophila genetics. The book was rightfully hailed as an important achievement and it introduced generations of readers to Morgan. Yet, in hindsight, Allen’s book largely misses an equally important part of Morgan’s work – his study (...) of development and regeneration. It is worth returning to this part of Morgan, exploring what Morgan contributed and also why he has been seen by contemporaries and historians such as Allen as having set aside some of the most important developmental problems. A closer look shows how Morgan’s view of cells and development that was different from that of his most noted contemporaries led to interpretation of his important contributions in favor of genetics. This essay is part of a special issue, revisiting Garland Allen's views on the history of life sciences in the twentieth century. (shrink)