In May 2011, more than a decade after the International Association of Athletics Federations (IAAF) and the International Olympic Committee (IOC) abandoned sex testing, they devised new policies in response to the IAAF's treatment of Caster Semenya, the South African runner whose sex was challenged because of her spectacular win and powerful physique that fueled an international frenzy questioning her sex and legitimacy to compete as female. These policies claim that atypically high levels of endogenous testosterone in women (caused by (...) various medical conditions) create an unfair advantage and must be regulated. Against the backdrop of Semenya's case and the scientific and historical complexity of ?gender verification? in elite sports, we question the new policies on three grounds: (1) the underlying scientific assumptions; (2) the policymaking process; and (3) the potential to achieve fairness for female athletes. We find the policies in each of these domains significantly flawed and therefore argue they should be withdrawn. (shrink)

Background: Low rates of participation of adolescents and young adults (AYAs) in clinical oncology trials may contribute to poorer outcomes. Factors that influence the decision of AYAs to participate in health research and whether these factors are different from those that affect the participation of parents of children with cancer. Methods: This is a secondary analysis of data from validated questionnaires provided to adolescents (>12 years old) diagnosed with cancer and parents of children with cancer at 3 sites in Canada (...) (Halifax, Vancouver, and Montreal) and 2 in the United States (Atlanta, GA, and Memphis, TN). Respondents reported their own research participation and cited factors that would influence their own decision to participate in, or to provide parental authorization for their child to participate in health research. Results: Completed questionnaire rates for AYAs and parents were 86 (46.5%) of 185 and 409 (65.2%) of 627, respectively. AYAs (n = 86 [67%]) and parents (n = 409 [85%]) cited that they would participate in research because it would help others. AYAs perceived pressure by their family and friends (16%) and their physician (19%). Having too much to think about at the time of accrual was an impediment to both groups (36% AYAs and 47% parents). The main deterrent for AYAs was that research would take up too much time (45%). Nonwhite parents (7 of 56 [12.5%]) were more apt to decline than white parents (12 of 32 [3.7%]; P < .01). Conclusions: AYAs identified time commitment and having too much to think about as significant impediments to research participation. Addressing these barriers by minimizing time requirements and further supporting decision-making may improve informed consent and impact on enrollment in trials. (shrink)

PURPOSE: There is an increasing demand for researchers to provide research results to participants. Our aim was to define an appropriate process for this, based on needs and attitudes of participants. METHODS: A multicenter survey in five sites in the United States and Canada was offered to parents of children with cancer and adolescents with cancer. Respondents indicated their preferred mode of communication of research results with respect to implications; timing, provider, and content of the results; reasons for and against (...) providing results; and barriers to providing results. RESULTS: Four hundred nine parents (including 19 of deceased children) and 86 adolescents responded. Most parents (n = 385; 94.2%) felt that they had a strong right to research results. For positive results, most wanted a letter or e-mail summary (n = 238; 58.2%) or a phone call followed by a letter (n = 100; 24.4%). If the results were negative, phone call (n = 136; 33.3%) or personal visits (n = 150; 36.7%) were preferred. Parents wanted the summary to include long-term sequelae and suggestions for participants (n = 341; 83.4%), effect on future treatments (n = 341; 83.4%), and subsequent research steps (n = 284; 69.5%). Understanding the researcher was a main concern about receiving results (n = 145; 35.5%). Parents felt that results provide information to support quality of life (n = 315; 77%) and raise public awareness of research (n = 282; 68.9%). Adolescents identified similar preferences. CONCLUSION: Parents of children with cancer and adolescents with cancer feel strongly that they have a right to be offered research results and have specific preferences of how and what information should be communicated. (shrink)

Psychiatry uncomfortably spans biological and psychosocial perspectives on mental illness, an idea central to Engel's biopsychosocial paradigm. This paradigm was extremely ambitious, proposing new foundations for clinical practice as well as a non-reductive metaphysics for mental illness. Perhaps given this scope, the approach has failed to engender a clearly identifiable research programme. And yet the view remains influential. We reassess the relevance of the biopsychosocial paradigm for psychiatry, distinguishing a number of ways in which it could be (re)conceived.

With contributions from psychiatry, psychology, neuroscience, and philosophy, this book provides the most comprehensive account to date of the interplay between biological, psychological, and social factors in mental health and their ethical dimensions.

Research uses of human bodies maintained by mechanical ventilation after being declared dead by neurological criteria, were first published in the early 1980s with a renewed interest in research on the newly or nearly dead occurring in about last decade. While this type of research may take many different forms, recent technologic advances in genomic sequencing along with high hopes for genomic medicine, have inspired interest in genomic research with the newly dead. For example, the Genotype-Tissue Expression program through the (...) National Institutes of Health aims to collect large numbers of diverse human tissues with the eventual goal of elucidating the genetic bases of common diseases through a better understanding of the relationship between genetic variation and gene expression. (shrink)

A novel Protocol Ethics Tool Kit (‘Ethics Tool Kit’) has been developed by a multi-stakeholder group of the Multi-Regional Clinical Trials Center of Brigham and Women9s Hospital and Harvard. The purpose of the Ethics Tool Kit is to facilitate effective recognition, consideration and deliberation of critical ethical issues in clinical trial protocols. The Ethics Tool Kit may be used by investigators and sponsors to develop a dedicated Ethics Section within a protocol to improve the consistency and transparency between clinical trial (...) protocols and research ethics committee reviews. It may also streamline ethics review and may facilitate and expedite the review process by anticipating the concerns of ethics committee reviewers. Specific attention was given to issues arising in multinational settings. With the use of this Tool Kit, researchers have the opportunity to address critical research ethics issues proactively, potentially speeding the time and easing the process to final protocol approval. (shrink)

Ever so often in the UK, there is a flurry of activity around the information requirements of donor-conceived individuals. In April 2013, it was the launch of a report from the Nuffield Council on Bioethics that brought the issue back to public consciousness.1Since 1991, information about treatment with donor gametes or embryos has been collected by the Human Fertilisation and Embryology Authority . Since then, over 35 000 donor-conceived individuals have been born through treatment in licensed clinics. Medical information and (...) information about donors’ appearance are collected by clinics, and donors are encouraged to put together a ‘pen portrait’ giving information about themselves for any resulting children. One focus of the new report is on improving the quality and quantity of information available about donors.Traditionally, gamete and embryo donations were practised on an anonymous basis, so that those born as a result of such donation may receive only non-identifying information about the donor when they reach the age of 18 . This changed in 2005 when donor anonymity was removed so that anyone donating after that time could be identified to individuals born as a result of the treatment. Those who have donated in the past are also able to reregister as identifiable donors. Much concern was expressed at the time that this would exacerbate the shortage of donors although the Nuffield Council on Bioethics reports that, 8 years on, those clinics that actively recruit donors appear to be successful in finding sufficient donors. The report recommends that the option of anonymous donation should not be reintroduced.A big issue of debate in the UK has been, and continues to be, whether parents should tell their …. (shrink)

In August, Amnesty International and the World Medical Association expressed concern at reports that a judge in Saudi Arabia had asked several hospitals in the country whether they could perform an operation to damage a man's spinal cord as punishment for attacking another man and leaving him paralysed. The man had already been sentenced to seven months imprisonment for the crime, the injured victim requested the further sentence under Sharia Law, which is strictly enforced across Saudi Arabia. According to reports, (...) one of the hospitals approached declined on ethical grounds. Another hospital stated that it was possible to damage the spinal cord in the way requested, but that the procedure would have to be done at a specialised hospital. 1In its statement, Amnesty International urged the authorities not to carry out the sentence, which it argued would be a grave violation of international human rights law and contravene the United Nations convention against Torture, to which Saudi Arabia is a state party. 2 The WMA expressed its support for the physicians who refused to carry out the request by the Saudi court, participation in which would constitute a severe breach of medical ethics. 3 The WMA reminded doctors that the Declaration of Tokyo clearly states that no physician should participate in the practice of torture or any other forms of cruel, inhuman or degrading procedures, whatever the offence of which the victim of such procedures is suspected, accused or guilty of. The Declaration also includes a prohibition of participation in the planning or advising for such a procedure. NHS white paperIn July 2010 the government published a White Paper outlining its plans to transform the delivery of National Health Services in England. 4 The White Paper has been described as ‘one of the biggest shake ups of the health system …. (shrink)

First Published in 2002. Routledge is an imprint of Taylor & Francis, an informa company.

In February 2014, the Belgian Parliament passed legislation allowing euthanasia for terminally ill children of all ages by 86 votes to 44, with 12 abstentions. The Bill became law in early March after being signed by the King, making Belgium the first country in the world to abolish age restrictions for euthanasia. Previously, the youngest age at which euthanasia was permitted was 12 years old in The Netherlands.1Euthanasia was legalised in Belgium in 2002, and the new legislation introduces amendments to (...) the law extending euthanasia to minors in certain circumstances. Euthanasia is now permissible for children of all ages where the child has a “terminal and incurable illness”, experiences “constant and unbearable physical suffering”, and death is expected to occur within a “brief period”. The child must be deemed capable of making the decision, and have the agreement of their parents.Belgian law sets no timetable for euthanasia from the point at which the patient first expresses a wish to die. As with adults seeking euthanasia, any request must be made in writing. A physician and “outsider” brought in to give a second opinion must agree upon the diagnosis and prognosis, and a paediatric psychiatrist or psychologist must certify in writing that the child possesses “the capacity of discernment”. Following this, the child's physician must meet with the parents to inform them of the outcome of the consultation and ensure they are in agreement with the child's request. The child and the family must receive psychological care and support if so desired.The move provoked heated debate and divided the medical, legal and political professions in Belgium. A group of 160 of the country's paediatricians opposed a change in the law, citing concerns about the largely subjective assessment of the “capacity of discernment”, and drawing attention to advances in …. (shrink)

While risk of harm is an important focus for whether clinical research on humans can and should proceed, there is uncertainty about what constitutes harm to a trial participant. In Phase I trials on healthy volunteers, the purpose of the research is to document and measure safety concerns associated with investigational drugs, and participants are financially compensated for their enrollment in these studies. In this article, we investigate how characterizations of harm are narrated by healthy volunteers in the context of (...) the adverse events they experience during clinical trials. Drawing upon qualitative research, we find that participants largely minimize, deny, or re-attribute the cause of these AEs. We illustrate how participants' interpretations of AEs may be shaped both by the clinical trial environment and their economic motivation to participate. While these narratives are emblematic of the larger ambiguity surrounding harm in the context of clinical trial participation, we argue that these interpretations also problematically maintain the narrative of the safety of clinical trials, the ethics of testing investigational drugs on healthy people, and the rigor of data collected in the specter of such ambiguity. (shrink)

IntroductionThe COVID-19 pandemic required more responsibilities from teachers, including implementing prevention strategies, changes in school policies, and managing their own mental health, which yielded higher dissatisfaction in the field.MethodsA cross-sectional web survey was conducted among educators to collect information on their experiences teaching during the COVID-19 pandemic throughout the 2020–2021 academic year. Qualtrics, an online survey platform, fielded the survey from May 6 to June 8, 2021 to a national, convenience sample of 1,807 respondents.ResultsFindings revealed that overall, 43% of K-12 (...) teachers reported a greater intention to leave the profession than previously recalled prior to the COVID-19 pandemic. Intention to leave was multi-level, and associated with socio-demographic factors, individual factors, and teachers’ agency. We also found demographic disparities with respect to race and gender around teachers’ ability to provide feedback to schools on opening/closing and overall dissatisfaction with school/district COVID-19 prevention strategies implementation and policies.ConclusionThese findings are consistent with the Job-Demand and Resources Model, which posits that lack of organizational support can exacerbate job stressors, leading to burnout. Specifically, dissatisfaction with the way school policies were implemented took a toll on teachers’ mental health, leading to a desire to leave the profession. These findings are also consistent with research conducted once in-person teaching resumed in 2020–2021, specifically that the COVID-19 pandemic exacerbated preexisting teacher shortages that led to self-reported issues of stress, burnout, and retention.ImplicationsFurther research is necessary to understand the resources that may be most useful to reduce the demands of teaching in the context of the COVID-19 pandemic. Some teachers are more likely to leave the field, and educational agencies may wish to target their teacher-retention efforts with emphasis on strong employee wellness programs that help educators to manage and reduce their stress. Education agency staff may wish to review policies and practices to provide meaningful opportunities to give input to school/district decisions and enable proactive communication channels. (shrink)

At the time of writing the COVID-19 pandemic was entering its ninth month, with nearly 800 000 recorded fatalities and 22 million infections in 188 countries and territories.1 In previous ethics briefings2 we raised concerns about the possibility that demand for life-sustaining treatment would overwhelm supply, with a consequent requirement for health professionals to make challenging triage decisions. Fortunately, to date, these have largely not been realised, although there is a possibility that countries in which containment measures have been less-successful, (...) such as South Africa, may still be required to triage.3 Despite the successful ‘flattening of the curve’ in many countries, there is a wide consensus that we remain firmly within the pandemic. Enormous practical challenges remain. It is unclear whether the pandemic will ultimately take the form of two or more successive waves, or whether the patchwork of global responses will lead to a sustained slow ‘burn’ with sporadic flare-ups.4 Areas of uncertainty include whether infection confers some immunity, how long any such immunity might last, whether effective vaccines can be developed and if seasonal temperature fluctuations alter the spread of the virus. The pandemic will also be fundamentally shaped by the decisions that governments make and the extent to which their diktats are complied with by citizens. With the – possibly temporary – retreat of urgent clinical ethics issues, such as triage, opportunities have arisen to reflect on some of the ethical questions that underlie and structure the demanding policy decisions that governments are wrestling with. One of the early questions was how to balance the complex constellation of costs and benefits associated with lockdown. Countries that …. (shrink)

Advances in genomics have led to calls for developing population-based preventive genomic sequencing programs with the goal of identifying genetic health risks in adults without known risk factors. One critical issue for minimizing the harms and maximizing the benefits of PGS is determining the kind and degree of control individuals should have over the generation, use, and handling of their genomic information. In this article we examine whether PGS programs should offer individuals the opportunity to selectively opt out of the (...) sequencing or analysis of specific genomic conditions or whether PGS should be implemented using an all-or-nothing panel approach. We conclude that any responsible scale-up of PGS will require a menu approach that may seem impractical to some, but that draws its justification from a rich mix of normative, legal, and practical considerations. (shrink)

Background: Despite procedural innovations and increasing numbers of uterus transplant attempts worldwide, the perspectives of uterus transplant (UTx) trial participants are lacking. Methods: We conducted a mixed-methods study with women with absolute uterine factor infertility (AUFI). Participants included women who had previously contacted the Cleveland Clinic regarding the Uterine Transplant Trial and met the initial eligibility criteria for participation. In-depth interviews were conducted in conjunction with FertiQoL, a validated and widely used tool to measure the impact of infertility on the (...) quality of life of infertility patients. Results: All (n = 19) rated their overall health as good; some experienced grief and social isolation. AUFI is a life-framing experience that influences acceptance by family, partners, peers, and one’s self. UTx is a means to gain control of reproductive autonomy. UTx allows family-building and the ability to play an active role in prenatal health and well-being. Establishing and maintaining a supportive relationship is a key issue of AUFI and when considering UTx. Risks of UTx are perceived relative to risks to self/child/family posed by adoption/surrogacy. Participants had no overall preference regarding living or deceased donor. Conclusions: The ways in which women with AUFI conceptualize this condition in their lives and choices around UTx and participating in a study of the procedure are multifaceted and textured. These perspectives are critical to understanding its ethical, legal, and social implications. (shrink)

In December, the National Data Guardian 1 for health and care in England, Dame Fiona Caldicott, published the outcomes of a public consultation about the Caldicott Principles and the role of Caldicott Guardians.1 The Caldicott Principles are good practice guidelines which have been used by health and social care organisations in the UK since 1997 to ensure that people’s data are kept safe and used in an ethical way.2 The role of the Caldicott Guardian is well-established in the UK. Caldicott (...) Guardians are senior people which support the upholding of the Caldicott Principles within organisations. In response to views expressed during the consultation the NDG has added an eighth Caldicott Principle to the existing seven and will use her statutory powers to issue guidance about the appointment of Caldicott Guardians for health and adult social care organisations. The new eighth Caldicott Principle is: ‘Inform patients and service users about how their confidential information is used’. It provides that: > A range of steps should be taken to ensure no surprises for patients and service users, so they can have clear expectations about how and why their confidential information is used, and what choices they have about this. These steps will vary depending on the use: as a minimum, this should include providing accessible, relevant and appropriate information - in some cases, greater engagement will be required. The NDG explains that the introduction of the new principle was prompted by consideration of the role that the legal concept of ‘reasonable expectations’ should play in shaping the circumstances under which health and care data may be legitimately shared. The NDG does not envisage that this principle will establish reasonable expectations as a legal basis in its own right …. (shrink)

It's not unusual to hear someone say, ‘I'd rather be dead than have Alzheimer's’. In ‘Alzheimer Disease and Preemptive Suicide’,1 Dena Davis explains why this is a reasonable position. People taking this position will welcome the discovery of biomarkers permitting very early AD diagnosis, Davis suggests, for this will enable more of them to end their lives while they remain motivated and able to do so. At the same time, Davis observes, people would have less reason to (...) resort to the drastic remedy of pre-emptive suicide if they had absolute authority over the medical treatment they received as patients with dementia; but the threat of pre-emptive suicide is not, in my view, a sufficient reason to grant competent individuals that authority.If preclinical diagnosis of AD becomes possible, some pre-emptive suicides will probably occur. There would be no ethical or practical way to ban such suicides, and it would be silly to try. Clinicians will undoubtedly try to discourage people seeking biomarker information in furtherance of a suicide plan, but savvy individuals will simply conceal their true motivation for having the tests. The real problem for people intent on self-destruction is that biomarkers are unlikely to deliver a clear suicide signal.First, as Davis notes, work on biomarkers remains in the research stage. No one yet knows whether biomarker tests will prove accurate enough to warrant clinical use. Second, even clinically accepted biomarker tests will generate imperfect information about future disease. Biomarkers may produce more accurate estimates of a person's risk of developing AD, but like all predictive tests, they will also yield false positive and negative results. The …. (shrink)

For all the young women and girls sitting in philosophy class wondering where the women are, this is the book for you. This collection of 21 chapters, each on a prominent woman in philosophy, looks at the impact that women have had on the field throughout history. From Hypatia to Angela Davis, The Philosopher Queens will be a guide to these badass women and how their amazing ideas have changed the world. This book is written both for newcomers to (...) philosophy, as well as all those professors who know that they could still learn a thing or two. This book is also for those many people who have told us that there are no great women philosophers. Please pledge, read this book and then feel free to get back to us. (shrink)

Emerging from the internationally recognised Theorising Normalcy and the Mundane conference series, the chapters in this book offer wide-ranging critiques of that most pervasive of ideas, 'normal'. In particular, they explore the precarious positions we are presented with and, more often than not, forced into by 'normal', and its operating system, 'normalcy' (Davis, 2010). They are written by activists, students, practitioners and academics and offer related but diverse approaches. Importantly, however, the chapters also ask, what if increasingly precarious encounters (...) with, and positions of, marginality and non-normativity offers us a chance (perhaps the chance) to critically explore the possibilities of 'imagining otherwise'? The book questions the privileged position of 'non-normativity'; in youth and unpacks the expectation of the 'normal' student in both higher and primary education. It uses the position of transable people to push the boundaries of 'disability', interrogates the psycho-emotional disablism of box-ticking bureaucracy and spotlights the 'urge to know' impairment. It draws on cross-movement and cross-disciplinary work around disability to explore topics as diverse as drug use, The Bible and relational autonomy. Finally, and perhaps most controversially, it explores the benefits of (re)instating 'normal'. By paying attention to the opportunities presented amongst the fissures of critique and defiance, this book offers new applications and perspectives for thinking through the most ordinary of ideas, 'normal'. (shrink)

A biography of the Spanish-born Jewish philosopher, rabbi, and physician of the Middle Ages who spent a good deal of his life in Egypt and whose works influenced the thinking of Jews, Christians, and Moslems.

The principle of informed consent obligates physicians to explain possible side effects when prescribing medications. This disclosure may itself induce adverse effects through expectancy mechanisms known as nocebo effects, contradicting the principle of nonmaleficence. Rigorous research suggests that providing patients with a detailed enumeration of every possible adverse event—especially subjective self-appraised symptoms—can actually increase side effects. Describing one version of what might happen (clinical “facts”) may actually create outcomes that are different from what would have happened without this information (another (...) version of “facts”). This essay argues that the perceived tension between balancing informed consent with nonmaleficence might be resolved by recognizing that adverse effects have no clear black or white “truth.” This essay suggests a pragmatic approach for providers to minimize nocebo responses while still maintaining patient autonomy through “contextualized informed consent,” which takes into account possible side effects, the patient being treated, and the particular diagnosis involved. (shrink)

This volume of essays offers direct comparisons of historic Western and Buddhist perspectives on ethics and metaphysics, tracing parallels and contrasts all the way from Plato to the Stoics, Spinoza to Hume, and Schopenhauer through to contemporary ethicists such as Arne Naess, Charles Taylor and Derek Parfit. It compares and contrasts each Western philosopher with a particular strand in the Buddhist tradition, in some chapters represented by individual writers such as Nagarjuna, Vasubandhu, Santideva or Tsong Khapa. It does so in (...) light of both analytic concerns and themes from the existentialist and phenomenological traditions, and often in an ecumenical spirit that bridges both analytic and continentalist approaches. Some of the deepest questions in ethics, dealing with the scope of agency, value-laden notions of personhood and the nature of value in general, are intertwined with questions in metaphysics. One set of questions addresses how varying conceptions of selfhood relate to moral values ; another set of questions addresses how a conception of oneself or one’s selves should or should not affect how one thinks of happiness, or eudaimonia, or – in classical Indian terms – artha, sukha or nirvana. Western philosophy has featured discussion of both, but some would argue that certain traditions of Asian philosophy have offered a more sustained and even treatment of both sets of questions. The Buddhist tradition in particular has not only featured much discussion on both fronts, but has attracted many contemporary philosophers to its distinctive spectrum of approaches, and to what is – from many ‘Western’ points of view – a seemingly subversive analysis of ego, selfhood and personhood, whether in metaphysical, phenomenological or other incarnations. (shrink)

This work is an essay in Peirce's epistemology, with about an equal emphasis on the "epistemology" as on the "Peirce's." In other words our intention has not been to write exclusively a piece of Peirce scholarshiJ> hence, the reader will find no elaborate tying in of Peirce's epistemology to other portions of his thought, no great emphasis on the chronology of his thought, etc. Peirce scholarship is a painstaking business. His mind was Labyrinthine, his terminology intricate, and his writings are, (...) as he himself confessed, "a snarl of twine." This book rather is intended perhaps even primarily as an essay in epistemology, taking Peirce's as the focal point. The book thus addresses a general philosophical audience and bears as much on the wider issue as on the man. I hope therefore that readers will give their critical attention to the problem of knowledge and the sugges tions we have developed around that problem and will not look here in the hope of finding an exhaustive piece of Peirce scholarship. (shrink)

Heidegger often asserted that Germany, as “the land of poets and thinkers,” has a central world-historical role to play in any possible recovery from the technological nihilism of the modern epoch. And yet, on numerous occasions, Heidegger also demonstrated a serious interest in dialogue with the East Asian traditions of Daoism and Zen Buddhism. How are Heidegger’s entrenched ethnocentrism and his interest in East-West dialogue related? While neither can be wholly confined to one or another period in his thought, this (...) article shows how, in the late 1930s, Heidegger begins to recover from the most ethnocentric period of his thought, and how he starts thinking of his reflections on the Western history of being as a preparation for what he came to call “the inevitable dialogue with the East Asian world.”. (shrink)

Is it possible to find resistance in the thought of Michel Foucault? Amid the diversity of his ideas, would he have left us clues to think the resisting act? By directing his intellectual production to power dispositfs, by invoking the figure of the "specific intellectual", and, also, in the later years of his life, then turning towards the constitution of subjectivities, Foucault provides us with unique ways to conceive and operate resistances. In this article we explore two directions of the (...) resistances in the thought of the philosopher. One of them, the resistances coextend the field of power, keeping a special relationship with the specific role of the intellectual and with Philosophy. In second place, we indicate that the resistances are “starting points” or “key supports” for the issues that Foucault confronts in his work, becoming an essential part of your own research method. (shrink)

Paul Davis explores the personal and cultural significances of translating as a distinctive mode of imaginative conduct for the five principal poet-translators of what was the golden age of the art in England: John Denham, Henry Vaughan, Abraham Cowley, John Dryden, and Alexander Pope.