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Celia Kitzinger, Jenny Kitzinger
This article explores the links between our roles as academics, advocates, and activists, focusing on our research on treatment decisions for patients in vegetative and minimally conscious states. We describe how our work evolved from personal experience through traditional social science research to public engagement activities and then to advocacy and activism. We reflect on the challenges we faced in navigating the relationship between our research, advocacy, and activism, and the implications of these challenges for our research ethics and methodology-giving practical examples of how we worked with research participants, wrote up case studies and developed interventions into legal debates...
April 15, 2019: Bioethics
Alexander Zambrano
In a recent article in this journal, Parker Crutchfield argues that if moral bioenhancement ought to be compulsory, as some authors claim, then it ought to be covert, i.e., performed without the knowledge of the population that is being morally enhanced. Crutchfield argues that since the aim of compulsory moral bioenhancement is to prevent ultimate harm to the population, compulsory moral bioenhancement is best categorized as a public health issue, and should therefore be governed by the norms and values that apply in public health settings...
April 15, 2019: Bioethics
Matthew S McCoy, Jonathan Warsh, Leah Rand, Michael Parker, Mark Sheehan
Patient and public involvement (PPI) has gained widespread support in health research and health policy circles, but there is little consensus on the precise meaning or justifications of PPI. We argue that an important step towards clarifying the meaning and justification for PPI is to split apart the familiar acronym and draw a distinction between patient and public involvement. Specifically, we argue that patient involvement should refer to the practice of involving individuals in health research or policy on the basis of their experience with a particular condition, while public involvement should refer to the practice of involving individuals in health policy or research based on their status as members of a relevant population...
April 8, 2019: Bioethics
Andrea Rodríguez-Prat, Albert Balaguer, Iris Crespo, Cristina Monforte-Royo
Studies that have explored the wish to hasten death (WTHD) in patients with advanced illness have found that the feeling of being a burden may trigger WTHD. Research suggests that both the feeling and the wish are indicators of multidimensional suffering whose meaning may depend on the patient's biographical background. Therefore, we carried out a systematic review and meta-ethnography. Fourteen qualitative studies, reported in 16 articles, met the inclusion criteria. The analysis identified two themes: the personal and social dimensions that could help to explain the feeling of being a burden in these patients...
April 8, 2019: Bioethics
Anna-Henrikje Seidlein, Ines Buchholz, Maresa Buchholz, Sabine Salloch
Quantitative research has called attention to the burden associated with informal caregiving in home nursing arrangements. Less emphasis has been placed, however, on care recipients' subjective feelings of being a burden and on caregivers' willingness to carry the burden in home care. This article uses empirical material from semi-structured interviews conducted with older people affected by multiple chronic conditions and in need of long-term home care, and with informal and professional caregivers, as two groups of relevant others...
April 8, 2019: Bioethics
Nancy S Jecker, Eriko Miwa
While people are still alive, we owe them respect. Yet what, if anything, do we owe the newly dead? This question is an urgent practical concern for aged societies, because older people die at higher rates than any other age group. One novel way in which Japan, the frontrunner of aged societies, meets its need to accommodate high numbers of newly dead is itai hoteru or corpse hotels. Itai hoteru offer families a way to wait for space in over-crowded crematoriums while affording an environment conducive to grieving...
April 4, 2019: Bioethics
Bruce P Blackshaw
In his recent article Perry Hendricks presents what he calls the impairment argument to show that abortion is immoral. To do so, he argues that to give a fetus fetal alcohol syndrome is immoral. Because killing the fetus impairs it more than giving it fetal alcohol syndrome, Hendricks concludes that killing the fetus must also be immoral. Here, I claim that killing a fetus does not impair it in the way that giving it fetal alcohol syndrome does. By examining the reason why giving a fetus this condition is wrong, I conclude that the same reasoning, on common pro-choice accounts, does not apply to killing the fetus...
April 3, 2019: Bioethics
Jonathan Anomaly, Christopher Gyngell, Julian Savulescu
It is likely that gene editing technologies will become viable in the current century. As scientists uncover the genetic contribution to personality traits and cognitive styles, parents will face hard choices. Some of these choices will involve trade-offs from the standpoint of the individual's welfare, while others will involve trade-offs between what is best for each and what is good for all. Although we think we should generally defer to the informed choices of parents about what kinds of children to create, we argue that decisions to manipulate polygenic psychological traits will be much more ethically complicated than choosing Mendelian traits like blood type...
April 2, 2019: Bioethics
Zoë Fritz, Caitríona Cox
We explore whether a Rawlsian approach might provide a guiding philosophy for the development of a healthcare system, in particular with regard to resolving tensions between different groups within it. We argue that an approach developed from some of Rawls' principles - using his 'veil of ignorance' and both the 'difference' and 'just savings' principles which it generates - provides a compelling basis for policy making around certain areas of conflict. We ask what policies might be made if those making them did not know if one was patient, doctor, nurse or manager - in this generation or the next...
March 18, 2019: Bioethics
Lucy Frith, Eric Blyth
This article discusses when it is ethically acceptable to withdraw consent for the storage and use of embryos and gametes. Currently, the law in the UK states that consent to use of a gamete or embryo can be withdrawn up to the point of the embryo's transfer to the recipient's uterus or when the gamete is used in providing treatment services; that is, the 'point of no return'. In this article, we will consider other points of no return and argue that having a single point of no return, a one size fits all form of consent can, in some cases, lead to restrictions on individuals' autonomy and cause particular types of harm...
March 18, 2019: Bioethics
Jan Piasecki, Vilius Dranseika
In this article we attempt to answer the question of how the ethical and conceptual framework (ECF) for a learning health-care system (LHS) affects some of the main controversies in research ethics by addressing five key problems of research ethics: (a) What is the difference between practice and research? (b) What is the relationship between research ethics and clinical ethics? (c) What is the ethical relevance of the principle of clinical equipoise? (d) Does participation in research require a higher standard of informed consent than the practice of medicine? and (e) What ethical principle should take precedence in medicine? These questions allow us to construct two opposite idealized positions on the distinction between research and practice: the integration model and the segregation model of research and practice...
March 18, 2019: Bioethics
Jeffrey Kirby
It is often challenging for mental health-care providers and health organizations to perform their various roles and to meet their varied obligations. In complex mental health-care circumstances the concurrent application of relevant ethical principles and values often leads to the emergence of completing obligations that need to be carefully weighed and balanced in the making of care-related decisions. Although some clinical circumstances, such as those potentially triggering the duty to warn, are adequately guided by existing rules based on legal precedents, there is a gap in decision-making support in other mental health-care domains...
March 18, 2019: Bioethics
Doug McConnell, Robert F Card
Current mainstream approaches to conscientious objection either uphold the standards of public health care by preventing objections or protect the consciences of health-care professionals by accommodating objections. Public justification approaches are a compromise position that accommodate conscientious objections only when objectors can publicly justify the grounds of their objections. Public justification approaches require objectors and assessors to speak a common normative language and to this end it has been suggested that objectors should be required to cast their objection in terms of public reason...
March 13, 2019: Bioethics
Rekha Nath
Fatness stigma is pervasive. Being fat is widely regarded a bad thing, and fat persons suffer numerous social and material disadvantages in virtue of their weight being regarded that way. Despite the seriousness of this problem, it has received relatively little attention from analytic philosophers. In this paper, I set out to explore whether there is a reasoned basis for stigmatizing fatness, and, if so, what forms of stigmatization could be justified. I consider two lines of reasoning that might be advanced to defend fat stigma...
February 13, 2019: Bioethics
Wendy Rogers
Bioethics is a practically oriented discipline that developed to address pressing ethical issues arising from developments in the life sciences. Given this inherent practical bent, some form of advocacy or activism seems inherent to the nature of bioethics. However, there are potential tensions between being a bioethics activist, and academic ideals. In academic bioethics, scholarship involves reflection, rigour and the embrace of complexity and uncertainty. These values of scholarship seem to be in tension with being an activist, which requires pragmatism, simplicity, certainty and, above all, action...
February 8, 2019: Bioethics
Toni C Saad, Daniel Rodger
In a recent article in this journal, Abram Brummett argues that new and future assisted reproductive technologies will provide challenging ethical questions relating to lesbian, gay, bisexual and transgender (LGBT) persons. Brummett notes that it is likely that some clinicians may wish to conscientiously object to offering assisted reproductive technologies to LGBT couples on moral or religious grounds, and argues that such appeals to conscience should be constrained. We argue that Brummett's case is unsuccessful because he: does not adequately interact with his opponents' views; equivocates on the meaning of 'natural'; fails to show that the practice he opposes is eugenic in any non-trivial sense; and fails to justify and explicate the relevance of the naturalism he proposes...
February 8, 2019: Bioethics
Diane O'Leary
Few conditions have sparked as much controversy as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Professional consensus has long suggested that the condition should be classified as psychiatric, while patients and advocacy groups have insisted it is a serious biological disease that requires medical care and research to develop it. This longstanding debate shifted in 2015, when U.S. governmental health authorities fully embraced medical classification and management. Given that some globally respected health authorities now insist that ME/CFS is a serious biological disease, this paper asks whether it can be ethical for the U...
February 8, 2019: Bioethics
Sanne van der Hout, Wybo Dondorp, Guido de Wert
Expanded universal carrier screening (EUCS) entails a population-wide screening offer for multiple disease-causing mutations simultaneously. Although there is much debate about the conditions under which EUCS can responsibly be introduced, there seems to be little discussion about its aim: providing carrier couples with options for autonomous reproductive choice. While this links in with current accounts of the aim of foetal anomaly screening, it is different from how the aim of ancestry-based carrier screening has traditionally been understood: reducing the disease burden in the population...
February 7, 2019: Bioethics
Daniel W Tigard
Moral distress in healthcare has been an increasingly prevalent topic of discussion. Most authors characterize it as a negative phenomenon, while few have considered its potentially positive value. In this essay, I argue that moral distress can reveal and affirm some of our most important concerns as moral agents. Indeed, the experience of it under some circumstances appears to be partly constitutive of an honorable character and can allow for crucial moral maturation. The potentially positive value, then, is twofold; moral distress carries both aretaic and instrumental value...
February 7, 2019: Bioethics
Samuel Kerstein
Suppose that a young athlete has just become quadriplegic. He expects to live several more decades, but out of self-interest he autonomously chooses to engage in physician-assisted suicide (PAS) or voluntary active euthanasia (VAE). Some of us are unsure whether he or his physician would be acting rightly in ending his life. One basis for such doubt is the notion that persons have dignity in a Kantian sense. This paper probes responses that David Velleman and Frances Kamm have suggested to the question of whether participating in PAS or VAE to benefit oneself, as the young man might, respects the dignity of persons, specified in an orthodox Kantian way...
February 3, 2019: Bioethics
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