This paper discusses the ethical and regulatory issues raised by ‘‘intragenics’’ – organisms that have been genetically modified using gene technologies, but that do not contain DNA from another species. Considering the rapid development of knowledge about gene regulation and genomics, we anticipate rapid advances in intragenic methods. Of regulatory systems developed to govern genetically modified organisms (GMOs) in North America, Europe, Australia, and New Zealand, the Australian system stands out in explicitly excluding intragenics from regulation. European systems are also (...) under pressure to exclude intragenics from regulation. We evaluate recent arguments that intragenics are safer and more morally acceptable than transgenic organisms, and more acceptable to the public, which might be thought to justify a lower standard of regulation. We argue that the exemption of intragenics from regulation is not justified, and that there may be significant environmental risks associated with them. We conclude that intragenics should be subject to the same standard of regulation as other GMOs. (shrink)

RationaleSurrogates of critically ill patients often have inaccurate expectations about prognosis. Yet there is little research on how intensive care unit clinicians should discuss prognosis, and existing expert opinion-based recommendations give only general guidance that has not been validated with surrogate decision makers.ObjectiveTo determine the perspectives of key stakeholders regarding how prognostic information should be conveyed in critical illness.MethodsThis was a multicenter study at three academic medical centers in California, Pennsylvania, and Washington. One hundred eighteen key stakeholders completed in-depth semistructured (...) interviews. Participants included 47 surrogates of adult patients with acute respiratory distress syndrome; 45 clinicians working in study ICUs, including physicians, nurses, social workers, and spiritual care providers; and 26 experts in health communication, decision science, ethics, family-centered care, geriatrics, healthcare disparities, palliative care, psychology, psychiatry, and critical care.Measurements and main resultsThere was broad support among surrogates for existing expert recommendations, including truthful prognostic disclosure, emotional support, tailoring the disclosure strategy to each family's needs, and checking for understanding. In addition, stakeholders offered suggestions that add specificity to existing recommendations, including: In addition to conveying prognostic estimates, clinicians should help families "see the prognosis for themselves" by showing families radiographic images and explaining the clinical significance of physical manifestations of severe disease at the bedside. Many physicians did not support using numeric estimates to convey prognosis to families, whereas many surrogates, clinicians from other disciplines, and experts believed numbers could be helpful. Clinicians should conceptualize prognostic communication as an iterative process that begins with a preliminary mention of the possibility of death early in the ICU stay and becomes more detailed as the clinical situation develops. Although prognostic information should be initially disclosed by physicians, other members of the multidisciplinary team-nurses, social workers, and spiritual care providers-should be given explicit role responsibilities to reinforce physicians' prognostications and help families process a poor prognosis emotionally.ConclusionsFamily members, clinicians, and experts identified specific communication behaviors that clinicians should use to discuss prognosis in the critical care setting. These findings extend existing opinion-based recommendations and should guide interventions to improve communication about prognosis in ICUs. (shrink)

Low-income women and, disproportionately low-income women of color seeking reproductive and pregnancy care are increasingly subject to what this article terms carceral care – care compromised by its’ proximity to punishment systems. This article identifies the legal and health care practice mechanisms leading to carceral care and proposes solutions designed to stop criminalization at the bedside.

_John Stuart Mill_ investigates the central elements of the 19th century philosopher’s most profound and influential works, from _On Liberty_ to _Utilitarianism_ and _The Subjection of Women_. Through close analysis of his primary works, it reveals the very heart of the thinker’s ideas, and examines them in the context of utilitarianism, liberalism and the British empiricism prevalent in Mill’s day. • Presents an analysis of the full range of Mill’s primary writings, getting to the core of the philosopher’s ideas. • (...) Examines the central elements of Mill’s writings in easily accessible prose • Places Mill’s work and thought within the larger cultural and social context of 19th century Britain • Illustrates the continued relevance of Mill’s philosophy to today’s reader. (shrink)

The aim of this book is to provide an accessible account of ethics in general practice, addressing concerns identified by practitioners. It contains many examples and allows the reader to gain practical insights into how to identify and analyze the ethical issues they encounter in everyday general practice.

Biological dysfunction is regarded, in many accounts, as necessary and perhaps sufficient for disease. But although disease is conceptualized as all-or-nothing, biological functions often differ by degree. A tension is created by attempting to use a continuous variable as the basis for a categorical definition, raising questions about how we are to pinpoint the boundary between health and disease. This is the line-drawing problem. In this paper, we show how the line-drawing problem arises within “dysfunction-requiring” accounts of disease, such as (...) those of Christopher Boorse and Jerome Wakefield. We then provide several detailed examples to establish that biological dysfunction cannot provide a boundary. We examine potential ways of resolving the line-drawing problem, either by dropping one of the claims that generates it, or by appealing to additional criteria. We argue that two of these options are plausible, and that each of these can be applied with regard to different diseases. (shrink)

Overdiagnosis refers to diagnosis that does not benefit patients because the diagnosed condition is not a harmful disease in those individuals. Overdiagnosis has been identified as a problem in cancer screening, diseases such as chronic kidney disease and diabetes, and a range of mental illnesses including depression and attention deficit hyperactivity disorder. In this paper, we describe overdiagnosis, investigate reasons why it occurs, and propose two different types. Misclassification overdiagnosis arises because the diagnostic threshold for the disease in question has (...) been set at a level where many people without harmful disease are nonetheless diagnosed. We illustrate misclassification overdiagnosis using the example of chronic kidney disease. Misclassification occurs in diseases diagnosed using biomarkers or based on patient reported phenomena. Maldetection overdiagnosis arises because, at the time the diagnosis is made and despite the presence of a 'gold standard' diagnostic test, it is not possible to discriminate between harmful and non-harmful cases of the index disease. We illustrate maldetection overdiagnosis using the example of thyroid cancer. While there is some overlap between misclassification and maldetection overdiagnosis, this conceptual analysis helps to clarify the phenomenon of overdiagnosis and is a necessary first step in developing strategies to address the problem. (shrink)

Biomedical innovation and translation are increasingly emphasizing research using “big data.” The hope is that big data methods will both speed up research and make its results more applicable to “real-world” patients and health services. While big data research has been embraced by scientists, politicians, industry, and the public, numerous ethical, organizational, and technical/methodological concerns have also been raised. With respect to technical and methodological concerns, there is a view that these will be resolved through sophisticated information technologies, predictive algorithms, (...) and data analysis techniques. While such advances will likely go some way towards resolving technical and methodological issues, we believe that the epistemological issues raised by big data research have important ethical implications and raise questions about the very possibility of big data research achieving its goals. (shrink)

Recent calls for retraction of a large body of Chinese transplant research and of Dr Jiankui He’s gene editing research has led to renewed interest in the question of publication, retraction and use of unethical biomedical research. In Part 1 of this paper, we briefly review the now well-established consequentialist and deontological arguments for and against the use of unethical research. We argue that, while there are potentially compelling justifications for use under some circumstances, these justifications fail when unethical practices (...) are ongoing—as in the case of research involving transplantations in which organs have been procured unethically from executed prisoners. Use of such research displays a lack of respect and concern for the victims and undermines efforts to deter unethical practices. Such use also creates moral taint and renders those who use the research complicit in continuing harm. In Part 2, we distinguish three dimensions of ‘non-use’ of unethical research: non-use of published unethical research, non-publication, and retraction and argue that all three types of non-use should be upheld in the case of Chinese transplant research. Publishers have responsibilities to not publish contemporary unethical biomedical research, and where this has occurred, to retract publications. Failure to retract the papers implicitly condones the research, while uptake of the research through citations rewards researchers and ongoing circulation of the data in the literature facilitates subsequent use by researchers, policymakers and clinicians. (shrink)

Current practices of identifying and treating small indolent thyroid cancers constitute an important but in some ways unusual form of overdiagnosis. Overdiagnosis refers to diagnoses that generally harm rather than benefit patients, primarily because the diagnosed condition is not a harmful form of disease. Patients who are overdiagnosed with thyroid cancer are harmed by the psycho-social impact of a cancer diagnosis, as well as treatment interventions such partial or total thyroidectomy, lifelong thyroid replacement hormone, monitoring, surgical complications and other side (...) effects. These harms seem to outweigh any putative benefit of knowing about a cancer that would not have caused problems if left undiscovered. In addition to harms to patients, thyroid cancer overdiagnosis leads to significant opportunity costs at a societal level, due to costs of diagnosis and treatment. Unlike many other overdiagnosed cancers, accurate risk stratification is possible with thyroid cancer. At the individual patient level, use of this risk information might support informed choice and/or shared decision-making, as mandated by clinical ethics frameworks. And this approach might, to some extent, help to reduce rates of diagnosis and intervention. In practice, however, it is unlikely to stem the rising incidence and associated harms and costs of overdiagnosed thyroid cancer, especially in situations where health professionals have conflicts of interest. We argue in this article that thyroid cancer overdiagnosis may be usefully understood as a public health problem, and that some public health approaches will be readily justifiable and are more likely to be effective in minimising its harms. (shrink)

Breast cancer screening aims to help women by early identification and treatment of cancers that might otherwise be life-threatening. However, breast cancer screening also leads to the detection of some cancers that, if left undetected and untreated, would not have damaged the health of the women concerned. At the time of diagnosis, harmless cancers cannot be identified as non-threatening, therefore women are offered invasive breast cancer treatment. This phenomenon of identifying non-harmful cancers is called overdiagnosis. Overdiagnosis is morally problematic as (...) it leads to overall patient harm rather than benefit. Further, breast cancer screening is offered in a context that exaggerates cancer risk and screening benefit, minimises risk of harm and impedes informed choice. These factors combine to create pathogenic vulnerability. That is, breast cancer screening exacerbates rather than reduces women’s vulnerability and undermines women’s agency. This paper provides an original way of conceptualising agency-supporting responses to the harms of breast cancer overdiagnosis through application of the concept of pathogenic vulnerability. (shrink)

Bioethics, Volume 35, Issue 7, Page 623-633, September 2021.

The question of whether activism should be overtly embraced as part of the bioethicist's role deserves serious consideration. Like others, we agree that bioethics is inescapably partisan; bioethical deliberation is based on trying to determine morally relevant features of situations and morally justifiable outcomes. Where disagreement arises is over the degree to which bioethicists should be activists. Meyers argues for a somewhat circumscribed role, limited to action on ethically concerning institutional matters, for those who are financially independent of the institutions. (...) We take a broader view, arguing that some issues are so morally egregious that there is a duty to take a stand against them, even if the prospects of success are dim. There is a need for further debate, sharing of experiences, and analysis of case studies, to support bioethicists who take a stand. (shrink)

Many healthcare practices expose people to risks of harmful outcomes. However, the major theories of moral philosophy struggle to assess whether, when and why it is ethically justifiable to expose individuals to risks, as opposed to actually harming them. Sven Ove Hansson has proposed an approach to the ethical assessment of risk imposition that encourages attention to factors including questions of justice in the distribution of advantage and risk, people’s acceptance or otherwise of risks, and the scope individuals have to (...) influence the practices that generate risk. This paper investigates the ethical justifiability of preventive healthcare practices that expose people to risks including overdiagnosis. We applied Hansson’s framework to three such practices: an ‘ideal’ breast screening service, a commercial personal genome testing service, and a guideline that lowers the diagnostic threshold for hypertension. The framework was challenging to apply, not least because healthcare has unclear boundaries and involves highly complex practices. Nonetheless, the framework encouraged attention to issues that would be widely recognised as morally pertinent. Our assessment supports the view that at least some preventive healthcare practices that impose risks including that of overdiagnosis are not ethically justifiable. Further work is however needed to develop and/or test refined assessment criteria and guidance for applying them. (shrink)

In 2000, the Center for Disease Control and Prevention’s National Center for Environmental Health issued a report that explored some of the ways in which “sprawl” impacts public health. The report has generated great interest, and state health officials are beginning to discuss the relationship between land use and public health. The CDC report has also produced a backlash. For example, the Southern California Building Industry Association labeled the report “a ludicrous sham” and argued that the CDC should stick to (...) “fighting physical diseases, not defending political ones.”In retrospect, it is probably unfortunate that this report was funded by an organization called “Sprawl Watch.” “Spraw” is a word that has no clear meaning but is applied to a huge range of issues involving suburban development. (shrink)

In 2000, the Center for Disease Control and Prevention’s National Center for Environmental Health issued a report that explored some of the ways in which “sprawl” impacts public health. The report has generated great interest, and state health officials are beginning to discuss the relationship between land use and public health. The CDC report has also produced a backlash. For example, the Southern California Building Industry Association labeled the report “a ludicrous sham” and argued that the CDC should stick to (...) “fighting physical diseases, not defending political ones.”In retrospect, it is probably unfortunate that this report was funded by an organization called “Sprawl Watch.” “Spraw” is a word that has no clear meaning but is applied to a huge range of issues involving suburban development. (shrink)

Some health care organizations allow physicians to withhold cardiopulmonary resuscitation from a patient, despite patient or surrogate requests that it be provided, when they believe it will be more harmful than beneficial. Such cases usually involve patients with terminal diagnoses whose medical teams argue that aggressive treatments are medically inappropriate or likely to be harmful. Although there is state-to-state variability and a considerable judicial gray area about the conditions and mechanisms for refusals to perform CPR, medical teams typically follow a (...) set of clearly defined procedures for these decisions. The procedures are based on the principle of nonmaleficence and typically include consultation with hospital ethics committees, reflecting the guidelines of relevant professional associations. Ethical debates about when CPR can and should be limited tend to rely more on discussions of theory, principles, and case studies than systematic empirical study of the situations in which such limitations are applied. Sociologists of bioethics call for empirical study, arguing that what ethicists and health professionals believe they are doing when they draft policies or invoke principles does not always mirror what is happening on the ground. In this article, we begin the task of modeling the empirical analyses sociologists call for, focusing on a cohort at Massachusetts General Hospital. We inductively analyzed ethics committee notes and medical records of nineteen patients whose surrogates did not accept the decision to withhold CPR. (shrink)

This article describes a qualitative investigation of environmental ethics as construed by environmental activists. Twenty-nine participants responded in writing to open-ended questions on their definitions of an environmental ethic, how they expressed and experienced this moral orientation in their lives, and what sustained it. Four major themes emerged. First, ethical consideration of the natural environment pervaded morality, values, and private and public life. Second, emotional or spiritual experiences, or personal fulfillment, were important for many. Third, there was disagreement on the (...) relationships among environmental principles, intentions, and behaviors, as well as the necessity of prescribing specific behaviors. Finally, there were diverse views on the role of humanitarian concerns in an environmental ethic. These themes are discussed in terms of parallels to religious experience, motivations for an environmental ethic, and implications for nonenvironmental realms of ethics and justice. (shrink)

The interaction between evidence-based medicineand doctors' duty of care to patients iscomplex. One the one hand, there is surely anobligation to take account of the bestavailable evidence when offering health care topatients. On the other hand, it is equallyimportant to be aware of important shortcomingsin the processes and practices ofevidence-based medicine. There are tensionsbetween the population focus of evidence-basedmedicine and the duties that doctors have toindividual patients. Implementingevidence-based medicine may have unpredictableconsequences upon the overall quality of healthcare. Patients may have (...) a range of reasons forpreferring one form of treatment over another,not all of which are captured by currentformulations of evidence. This paper examinesthese issues, using relevant examples fromevidence-based medicine. (shrink)

Medicine seeks to overcome one of the most fundamental fragilities of being human, the fragility of good health. No matter how robust our current state of health, we are inevitably susceptible to future illness and disease, while current disease serves to remind us of various frailties inherent in the human condition. This article examines the relationship between fragility and uncertainty with regard to health, and argues that there are reasons to accept rather than deny at least some forms of uncertainty. (...) In situations of current ill health, both patients and doctors seek to manage this fragility through diagnoses that explain suffering and provide some certainty about prognosis as well as treatment. However, both diagnosis and prognosis are inevitably uncertain to some degree, leading to questions about how much uncertainty health professionals should disclose, and how to manage when diagnosis is elusive, leaving patients in uncertainty. We argue that patients can benefit when they are able to acknowledge, and appropriately accept, some uncertainty. Healthy people may seek to protect the fragility of their good health by undertaking preventative measures including various tests and screenings. However, these attempts to secure oneself against the onset of biological fragility can cause harm by creating rather than eliminating uncertainty. Finally, we argue that there are good reasons for accepting the fragility of health, along with the associated uncertainties. (shrink)

In this paper we argue that surgeons face a particular kind of within-role conflict of interests, related to innovation. Within-role conflicts occur when the conflicting interests are both legitimate goals of professional activity. Innovation is an integral part of surgical practice but can create within-role conflicts of interest when innovation compromises patient care in various ways, such as by extending indications for innovative procedures or by failures of informed consent. The standard remedies for conflicts of interest are transparency and recusal, (...) which are unlikely to address this conflict, in part because of unconscious bias. Alternative systemic measures may be more effective, but these require changes in the culture of surgery and accurate identification of surgical innovation. (shrink)

Twenty-nine environmental activists (mean age, 49.8) responded in writing to questions on influences that gave rise to environmental ethics in their own lives. Answers represented all phases of the lifespan. Through a qualitative analysis, six principle themes emerged: (a) deep environmental concern and an affiliation with nature often began in early childhood; (b) a combination of intellectual or academic and direct experiences with nature contributed to the development of environmental ethics; (c) familial and extra familial models were influential; (d) for (...) some, environmental ethics was tied to spiritual, cultural, or religious feeling; (e) the development of environmental ethics was linked with identity and generativity issues; and (f) historical events interacted with individual development in the formation of an environmental ethics. These themes are discussed in terms of continuities and discontinuities in lifespan development, the role of the family and of history, and the relation between reason and emotion in the development of an environmental ethics. (shrink)

Objective We reviewed human–robot interaction (HRI) participatory design (PD) research with older adults. The goal was to identify methods used, determine their value for design of robots with older adults, and provide guidance for best practices. Background Assistive robots may promote aging-in-place and quality of life for older adults. However, the robots must be designed to meet older adults’ specific needs and preferences. PD and other user-centered methods may be used to engage older adults in the robot development process to (...) accommodate their needs and preferences and to assure usability of emergent assistive robots. Method This targeted review of HRI PD studies with older adults draws on a detailed review of 26 articles. Our assessment focused on the HRI methods and their utility for use with older adults who have a range of needs and capabilities. Results Our review highlighted the importance of using mixed methods and including multiple stakeholders throughout the design process. These approaches can encourage mutual learning (to improve design by developers and to increase acceptance by users). We identified key phases used in HRI PD workshops (e.g., initial interview phase, series of focus groups phase, and presentation phase). These approaches can provide inspiration for future efforts. Conclusion HRI PD strategies can support designers in developing assistive robots that meet older adults’ needs, capabilities, and preferences to promote acceptance. More HRI research is needed to understand potential implications for aging-in-place. PD methods provide a promising approach. (shrink)

Members of the transforming growth factor beta (TGFβ) family are pleiotropic cytokines with key roles in tissue morphogenesis and growth. TGFβ1, TGFβ2 and TGFβ3 are abundant in mammalian reproductive tissues, where development and cyclic remodelling continue in post‐natal and adult life. Potential roles for TGFβ have been identified in gonad and secondary sex organ development, spermatogenesis and ovarian function, immunoregulation of pregnancy, embryo implantation and placental development. However, better tools must now be employed to map more precisely essential functions and (...) the regulatory networks governing their activity. Gene ablation and transgenic models are expected to provide novel insights into distinct physiological activities for each TGFβ isoform in normal reproductive function and reproductive pathologies. It is also necessary to consider the mechanisms controlling TGFβ activation from latent precursor forms, and receptor and binding protein expression. Smad intracellular signalling circuitry and modulation by environmental stimuli through cross‐talk with other signal transduction pathways will further constrain TGFβ action. This review examines existing evidence for TGFβ1, TGFβ2 and TGFβ3 regulation of male and female reproductive biology, and highlights prospects for future research. BioEssays 24:904–914, 2002. © 2002 Wiley Periodicals, Inc. (shrink)

Bioethics and Buddhism. Damien Keown. Macmillan Press, London 1995, and St. Martin's Press, New York 1995. xvi, 208 pp. £40.

Synthetic biology (synbio) involves designing and creating new living systems to serve human ends, using techniques including molecular biology, genomics, and engineering. Existing bioethical analyses of synbio focus largely on balancing benefits against harms, the dual-use dilemma, and metaphysical questions about creating and commercializing synthetic organisms. We argue that these approaches fail to consider key feminist concerns. We ground our normative claims in two case studies, focusing on the public good, who holds and wields power, and synbio research projects’ particularity (...) and context. Attention to feminist concerns is essential for synbio to realize its potential in ethically justifiable ways. (shrink)

Throughout March and April 2020, debate raged about how best to allocate limited intensive care unit resources in the face of a growing COVID-19 pandemic. The debate was dominated by utility-based arguments for saving the most lives or life-years. These arguments were tempered by equity-based concerns that triage based solely on prognosis would exacerbate existing health inequities, leaving disadvantaged patients worse off. Central to this debate was the assumption that ICU admission is a valuable but scarce resource in the pandemic (...) context.In this paper, we argue that the concern about achieving equity in ICU triage is problematic for two reasons. First, ICU can be futile and prolong or exacerbate suffering rather than ameliorate it. This may be especially true in patients with COVID-19 with emerging data showing that most who receive access to a ventilator will still die. There is no value in admitting patients with poor prognostic indicators to ICU to meet an equity target when intensive critical care is contrary to their best interests. Second, the focus on ICU admission shifts focus away from important aspects of COVID-19 care where there is greater opportunity for mitigating suffering and enhancing equitable care.We propose that the focus on equity concerns during the pandemic should broaden to include providing all people who need it with access to the highest possible standard of end-of-life care. This requires attention to culturally safe care in the following interlinked areas: palliative care, communication and decision support and advanced care planning. (shrink)

Shifts in the philosophy of the “state” and a growing emphasis on the “Big Society” have placed an increasing onus on a newly emerging organizational form, social enterprises, to deliver innovative solutions to ease societal issues. However, the question of how social enterprises manage the process of social innovation remains largely unexplored. Based on insights from both in-depth interviews and a quantitative empirical study of social enterprises, this research examines the role of stakeholder relationships in supporting the process of social (...) innovation within social enterprises. We find that social enterprises are adept at working with their stakeholders in the ideation stage of social innovation. In contrast, they often fail to harness knowledge and expertise from their partners during the social innovation implementation phase. Consequently, we propose a social innovation–stakeholder relationship matrix that provides social enterprises in particular with insight for developing stakeholder relationships to achieve their social innovation missions. (shrink)

We invoke the ideal of tolerance in response to conflict, but what does it mean to answer conflict with a call for tolerance? Is tolerance a way of resolving conflicts or a means of sustaining them? Does it transform conflicts into productive tensions, or does it perpetuate underlying power relations? To what extent does tolerance hide its involvement with power and act as a form of depoliticization? Wendy Brown and Rainer Forst debate the uses and misuses of tolerance, an (...) exchange that highlights the fundamental differences in their critical practice despite a number of political similarities. Both scholars address the normative premises, limits, and political implications of various conceptions of tolerance. Brown offers a genealogical critique of contemporary discourses on tolerance in Western liberal societies, focusing on their inherent ties to colonialism and imperialism, and Forst reconstructs an intellectual history of tolerance that attempts to redeem its political virtue in democratic societies. Brown and Forst work from different perspectives and traditions, yet they each remain wary of the subjection and abnegation embodied in toleration discourses, among other issues. The result is a dialogue rich in critical and conceptual reflections on power, justice, discourse, rationality, and identity. (shrink)

In this paper, we examine recent critiques of the debate about defining disease, which claim that its use of conceptual analysis embeds the problematic assumption that the concept is classically structured. These critiques suggest, instead, developing plural stipulative definitions. Although we substantially agree with these critiques, we resist their implication that no general definition of “disease” is possible. We offer an alternative, inductive argument that disease cannot be classically defined and that the best explanation for this is that the concept (...) is structured as a cluster. We further argue that we do not need to reject the possibility of defining the general concept “disease” to legitimate developing stipulative definitions of disease that are relative to particular purposes. A cluster definition of disease is compatible with contextually motivated definitions, which may be considered précisifications of the more general cluster concept. (shrink)

Surgical advances can provide great benefits to patients but can come at a cost. The successes are often matched by failures that cause harm to patients. The risks of surgery create a strong ethical imperative for research to establish the safety and efficacy of new treatments. Surgical research is, however, challenging for a number of reasons including the lack of a clear boundary between variations in practice, innovation and research, its irreversible nature, the difficulty of performing placebo-controlled randomised trials, confounding (...) factors such as surgeon learning curves and conflicts of interest. In this chapter the ethical issues raised by surgical innovation are explored with the use of a case study based on the uptake of vaginal mesh to treat vaginal prolapse to highlight these issues (Sects. 12.1 and 12.2). In Sect. 12.3 the argument for the value of a structured approach to introducing innovations, such as that developed by the IDEAL Collaboration, which clarifies both ethical and methodological issues at each stage of research is proposed. This chapter recognises that ethical challenges extend beyond adequate ethical evaluation of the innovation in the care of individual patients to include broader issues such as justice in access to any new interventions. (shrink)

We thank Goldstein and Peterson, Caplan, and Bramstedt for engaging with our paper on the ethics of publishing and using Chinese transplant research that involves organs procured from executed prisoners.1–4 In that paper, we examine consequentialist and deontological arguments for and against using data from unethical research. Goldstein and Peterson question the relationship between the social and scientific value of the research and the decision to publish the results. They argue that the failure to publish scientifically valid and socially valuable (...) Chinese transplant research results in potential repetition of the research and subsequent exposure of new participants to research risks for data that already exists. This argument has intuitive appeal, in both its positive form and negative form. Prima facie, failure to use the data does seem to breach a fundamental principle of research ethics, that of only exposing people to risks in research to produce novel and socially valuable knowledge. However, this point relies heavily on the assumption that data from unethical research are valid and valuable. This is a useful assumption to make in a theoretical argument as it clarifies the challenge of weighing up the potential utility of the …. (shrink)

In this article we examine the role and ethics of communications in planning for an influenza pandemic. We argue that ethical communication must not only he effective, so that pandemic plans can be successfully implemented, communications should also take specific account of the needs of the disadvantaged, so that they are not further disenfranchised. This will require particular attention to the role of the mainstream media which may disadvantage the vulnerable through misrepresentation and exclusion.

The Routledge Handbook of Feminist Bioethics is an outstanding resource for anyone with an interest in feminist bioethics, with chapters covering topics from justice and power to the climate crisis. Comprising 42 chapters by emerging and established scholars, the volume is divided into six parts: Foundations of Feminist Bioethics Identity and Identifications Science, Technology and Research Health and Social Care Reproduction and Making Families Widening the Scope of Feminist Bioethics The volume is essential reading for anyone with an interest in (...) bioethics or feminist philosophy, and will prove an invaluable resource for scholars, teachers, and advanced students. (shrink)

Bioethics, Volume 36, Issue 6, Page 728-730, July 2022.

_Growing up with Parents who have Learning Difficulties_ uses a life-story approach to present new evidence about how children from such families manage the transition to adulthood, and about the longer-term outcomes of such an upbringing. It offers a view of parental competence as a social attribute rather than an individual skill, assessing the implications for institutional policies and practices. The authors address the notion of children having to parent their disabled parents and argue for a shift in emphasis from (...) protecting children to supporting families. This innovative book provides a fresh approach to a subject rife with prejudice and challenges us to think again about many taken-for-granted ideas about the process of parenting and the needs of children. It also demonstrates the power of narrative research and its capacity for bringing alive people's experience in a way that enables us to better understand their lives. (shrink)