Is infertility a disease and does it matter?

Claims about whether or not infertility is a disease are sometimes invoked to defend or criticize the provision of state‐funded treatment for infertility. In this paper, I suggest that this strategy is problematic. By exploring infertility through key approaches to disease in the philosophy of medicine, I show that there are deep theoretical disagreements regarding what subtypes of infertility qualify as diseases. Given that infertility’s disease status remains unclear, one cannot uncontroversially justify or undermine its claim to medical treatment by claiming that it is or is not a disease. Instead of focusing on disease status, a preferable strategy to approach the debate about state‐funded treatment is to explicitly address the specific ethical considerations raised by infertility. I show how this alternative strategy can be supported by a recent theoretical framework in the philosophy of medicine which avoids the problems associated with the concepts of health and disease.     

Stemming the Tide of Normalisation: An Expanded Feminist Analysis of the Ethics and Social Impact of Embryonic Stem Cell Research

Feminists have indicated the inadequacies of bioethical debates about human embryonic stem cell research, which have for the most part revolved around concerns about the moral status of the human embryo. Feminists have argued, for instance, that inquiry concerning the ethics and politics of human embryonic stem cell research should consider the relations of social power in which the research is embedded. My argument is that this feminist work on stem cells is itself inadequate, however, insofar as it has not incorporated an analysis of disability into its considerations of the ethical and political issues that surround the phenomena. Thus, I consider claims that disability theorists and anti-disability activists have made about the research. I conclude by indicating that stem cell research must be situated within a cultural matrix that operates in the service of normalisation.     

Ethical concerns in the research and treatment of complex disease

Research on and treatment of complex diseases raise familiar ethical issues concerning informed consent, privacy, confidentiality, insurability, employability and social stigma. Consideration of the family as the unit of study, or point of medical intervention, presents some additional twists to these common ethical concerns. In addition, complex diseases present particular ethical challenges because different social and political incentives accompany placing emphasis on either the genetic or the environmental components of the diseases (e.g. in allocating research funds or ascribing responsibility for illness).     

Putting concerns about nature in context: the case of agricultural biotechnology

Concerns about nature are playing increasingly prominent roles in a variety of social debates, including medical biotechnology, environmental protection, and agricultural biotechnology. These concerns are often simply rejected as incoherent: critics argue that there is no good account for how natural states of affairs can have moral value, and that the concept of "nature" is too multifarious and vague to be deployed in moral argument anyway. When these concerns are defended, they are frequently formulated as strong claims that make implausible ontological commitments and that ignore the linkages between these different debates. Agricultural biotechnology provides an especially challenging case study for evaluating concerns about nature. I offer a qualified defense that recognizes these concerns as conceptually linked, attends to social context at appropriate points, and overcomes the charges of incoherence. This defense supports a restrained treatment of concerns about nature in public policy: public policy can neither endorse nor dismiss them. In the case of agricultural biotechnology, this stance probably mandates some form of labeling.     

Melanoma in the shopping mall: A utilitarian argument for offering unsolicited medical opinions in informal settings

Doctors occasionally make diagnoses in strangers outside of formal medical settings by using the medical skill of visual inspection, such as noticing signs of melanoma or the symptoms of hyperthyroidism. This may cause considerable moral unease and doubts on the side of the diagnosing physician. Such encounters force physicians to consider whether or not to intervene by introducing themselves to the stranger and offering an unsolicited medical opinion despite the absence of a formal doctor‐patient relationship. A small body of literature has addressed the topic of the unsolicited medical opinion, often with a primary focus on practical advice. This article seeks to establish an ethical‐theoretical basis for physicians' ethical obligation to offer an unsolicited medical opinion when they make a diagnosis by visual inspection in a stranger outside of the formal medical context. Using a utilitarian approach, it is argued that, if it is in the physicians' power to prevent a possible loss of well‐being, without thereby sacrificing anything of equal value, physicians have an ethical obligation to intervene.     

Racial discrimination: How not to do it

The UNESCO Statements on Race of the early 1950s are understood to have marked a consensus amongst natural scientists and social scientists that ‘race’ is a social construct. Human biological diversity was shown to be predominantly clinal, or gradual, not discreet, and clustered, as racial naturalism implied. From the seventies social constructionists added that the vast majority of human genetic diversity resides within any given racialised group. While social constructionism about race became the majority consensus view on the topic, social constructionism has always had its critics. Sesardic (2010) has compiled these criticisms into one of the strongest defences of racial naturalism in recent times. In this paper I argue that Sesardic equivocates between two versions of racial naturalism: a weak version and a strong version. As I shall argue, the strong version is not supported by the relevant science. The weak version, on the other hand, does not contrast properly with what social constructionists think about ‘race’. By leaning on this weak view Sesardic’s racial naturalism intermittently gains an appearance of plausibility, but this view is too weak to revive racial naturalism. As Sesardic demonstrates, there are new arguments for racial naturalism post-Human Genome Diversity Project. The positive message behind my critique is how to be a social constructionist about race in the post-genomic era.     

Do we need theory to study disease? Lessons from cancer research and their implications for mental illness

This article applies general ideas from contemporary philosophy of science--chief among them that much good science proceeds without theories and laws--to the science of medicine. I claim that traditional philosophical debates over the nature of disease make demands on medicine that are mistaken. I demonstrate this philosophical error by applying the perspective of the philosophy of science to understanding the nature of disease in two concrete cases, cancer and depression. I first argue that cancer research produces various kinds of piecemeal causal explanation and does so without any well-developed theory of normal and malignant functioning, despite the rhetoric of some leading cancer researchers. I then defuse doubts about the scientific status of psychiatry, by demonstrating that it is not necessary to have a theory of normal functioning in order to understand and treat depression.     

Comforting the (exile) afflicted in Croatia--around and beyond the analytical approaches of critical medical anthropology

Recently, there has been a growing recognition that any research conducted with those that suffer should definitely be critical of the continuing policy of group equalizing, either in relation to ones ethnicity or any other salient parameter. However, it is seldom that this critical knowledge is applied from "outsiders" when a negation and re-evaluation of history, especially concerning the medical systems and their historical development within nations and populations, is used. The propositions within this paper are given on the basis of knowledge gained in the course of a long-term study dedicated to the exiled in Croatia, and are tightly linked to theoretical perspectives of critical medical anthropology, yet exceed its limits. Critical medical anthropologists deeply engage in ongoing debates that stress how there needs to be more understanding of the necessity to study the wider social context of any population we approach and analyze. However, the knowledge about wider social contexts is unachievable without the new grounds of dialogue being created between professionals and researchers of all disciplines and equally--regardless whether they are "insiders" or "outsiders" to the problem in focus. The knowledge about developments in developing countries, and especially of countries in post-war transition cannot be solely built on strategies of globality and theoretical explorations disconnected from people and their experiences on ground, especially when they concern the delicate issues of social and health care. Hopingly, the given examples in this paper will add to dialogues of corrective kind that should be raised more often.     

‘A good neighbour is not one that gives’: detachment,ethics, and the relational self in Kenya

Since Mauss, anthropologists have been drawn to gifts because they are understood to index the moral, often in contrast to the amorality of the market. Giving is considered to bring people closer together, weaving them into the fabric of sociality. However, in Korogocho, a low‐income informal settlement in Nairobi, women recognize the dangers of giving and of closeness. Not only could others be a burden on them, but they could also be a burden on others. Thus, women seek ways in which they can detach from one another. Beginning with the assumption of the relational self, I argue that this detachment is an ethical practice that can be best understood as what I term a ‘care for relationships’. In making this argument, this article aims to contribute to debates within the anthropology of ethics and morality concerning social relationships by showing the way in which relationships might be the explicit object of ethical practices.     

Genetic Testing: The Appropriate Means for a Desired Goal?

Scientists, the medical profession, philosophers, social scientists, policy makers, and the public at large have been quick to embrace the accomplishments of genetic science. The enthusiasm for the new biotechnologies is not unrelated to their worthy goal. The belief that the new genetic technologies will help to decrease human suffering by improving the public’s health has been a significant influence in the acceptance of technologies such as genetic testing and screening. But accepting this end should not blind us to the need for an evaluation of whether a particular means is adequate to achieve it. Lack of such evaluation notwithstanding, discussions of the ethical, legal, and social implications have tended to presuppose that the development and implementation of genetic testing will be an appropriate means to reduce human suffering in significant ways. I argue here that such an assumption is mistaken. In part this is the case because human biology is more complex than sometimes it is made to appear in these debates. But, the idea that human suffering resulting from disease can be reduced in significant ways with the use of genetic testing also ignores the social contexts in which these technologies are being developed and implemented.     

On Cloning: Advocating History of Biology in the Public Interest

Cloning – the process of creating a cell, tissue line or even a complete organism from a single cell – or the strands that led to the cloning of a mammal, Dolly, are not new. Yet the media coverage of Dolly's inception raised a range of reactions from fear or moral repulsion, to cautious optimism. The implications for controlling human reproduction were clearly in the forefront, though many issues about animals emerged as well. On topics of public interest such as cloning, historians of biology have the opportunity to make a unique contribution. Such debates are often aired as if they have no precedents, either in biology or in the ethical, moral, and social concerns arising in the public arena. The technology leading to Dolly draws on strands of research going back to the 1890s, and the cycle of public response has been repeated often in the past century. What can we learn from examining these events historically, and how can we – or should we even try – to inform public opinion? I think we should try and will outline briefly some of the ways that can work.     

On fun and freedom: young women's moral learning in Indonesian Islamic boarding schools

This article analyses the role of fun and freedom in the moral learning of young women students in two Indonesian Islamic boarding schools. Recent debates about Islam and ethical subject formation have centred on the assumed tension between Islam and freedom. I examine decisions about television viewing and dress to illustrate both the flexibility and fixity of moral values and evaluation in girls’ lives. I argue that anthropologists of morality and Islam should take seriously moments of fun as important instances for ‘moral ludus’ or ‘moral play’ – the testing, shifting, and reshaping of the boundaries of moral behaviours that involve balancing the demands of various social fields and the larger ethical community in which a person is embedded. I suggest that these moments be viewed not as ruptures or instances of hypocrisy but as everyday occurrences of embedded agency in the lives of piety-minded individuals.     

A Kantian Stance on the Intentional Stance

I examine the way in which Daniel Dennett (1987, 1995) uses his 'intentional'and 'design' stances to make the claim that intentionality is derived fromdesign. I suggest that Dennett is best understood as attempting to supplyan objective, nonintentional, naturalistic rationale for our use of intentionalconcepts. However, I demonstrate that his overall picture presupposesprior application of the intentional stance in a preconditional, ineliminable,'sense-giving' role. Construed as such, Dennett's account is almostidentical to the account of biological teleology offered by Kant in TheCritique of Judgement, with the consequence that Dennett's naturalism isuntenable. My conclusions lead to doubts concerning the legitimacy of anyaccount attempting to naturalise intentionality by extracting normativityfrom biology and also point to a novel account of biological function.     

Ethics consultation as moral engagement

I will begin by presenting some doubts about what might be called the "received view" of the role of the moral expert as a health care consultant. Then I will review the literature on moral experts and moral expertise and proceed to apply the results of that review to the notion that there are some who are expert in ethical decision making in health care. I will try to show that certain conclusions that can be drawn from this rather circumscribed topic have implications for the very conception of the relationship between moral theory and clinical ethics.     

Medical professionalism and the social contract

Conceptions of professionalism in medicine draw on social contract theory; its strengths and weaknesses play out in how we reason about professionalism. The social contract metaphor may be a heuristic device prompting reflection on social responsibility, and as such is appealing: it encourages reasoning about privilege and responsibility, the broader context and consequences of action, and diverse perspectives on medical practice. However, when this metaphor is elevated to the status of a theory, it has well-known limits: the assumed subject position of contractors engenders blind spots about privilege, not critical reflection; its tendency to dress up the status quo in the trappings of a theoretical agreement may limit social negotiation; its attempted reconciliation of social obligation and self-interest fosters the view that ethics and self-interest should coincide; it sets up false expectations by identifying appearance and reality in morality; and its construal of prima facie duties as conditional misdirects ethical attention in particular situations from current needs to supposed past agreements or reciprocities. Using philosophical ideas as heuristic devices in medical ethics is inevitable, but we should be conscious of their limitations. When they limit the ethical scope of debate, we should seek new metaphors.     

The death of dignity is greatly exaggerated: Reflections 15 years after the declaration of dignity as a useless concept

Fifteen years ago, Ruth Macklin shook the medical community with her claim in the BMJ that dignity is a useless concept. Her essay provoked a storm of reactions. What have we learned from the debate? In this article I analyse the responses to her essay and the following debate to investigate whether she was right that “[d]ignity is a useless concept in medical ethics and can be eliminated without any loss of content.” While some of the commentaries misconstrued her claim and argue against strawmen, others forcefully maintained that the concept of dignity has functions beyond “respect for persons and their autonomy.” One important point that came out of the debate is that dignity is a generic concept that covers more ground than “respect for persons or their autonomy.” In particular, dignity seems to have a wide range of protective functions as well as having reciprocal, relational, and social aspects. Dignity appears more attributional and norm-formative than respect for persons and autonomy. While the claim that dignity is unclear, vague, and can be used sloganistically seems highly relevant, it is argued that this vagueness fulfils important functions in ethics. Moreover, dismissing dignity because of its lack of clarity has implications for “respect for persons” and “autonomy,” which are also used vaguely and sloganistically. No doubt medical ethics should use as a clear concept as the context requires. Nonetheless, dignity still seems to be a widely used generic concept in ethical debates and doing as much ethical work as “respect for persons” or “respect for autonomy.” Therefore, the death of dignity seems to be greatly exaggerated.     

Ethical Concerns Over Testing on Human Subjects

A Joint Subcommittee of the Scientific Advisory Board and the FIFRA Scientific Advisory Panel recently issued a report to the U.S. Environmental Protection Agency (USEPA) concerning the use of data derived from testing on human subjects. The authors address both scientific and ethical issues pertaining to such research and conclude that as long as certain conditions are met, the deliberate exposure of voluntary subjects to potentially dangerous levels of pesticides can be both scientifically and ethically sound. I argue that there are further ethical problems not adequately addressed in the report. In particular, there are serious concerns about fairness and exploitation in connection with paid volunteers, which also raise questions about the degree to which the conditions of non-coercion and informed consent are likely to be met. The primary aim of this paper is to bring these issues more fully into the discussion. I also consider briefly the constraints placed on legitimate justifications of human studies by the requirement that the promotion of public safety be the ultimate purpose of the studies. This will help to clarify which reasons in support of human studies are in principle legitimate, which will in turn better enable us to weigh them against the ethical concerns about fairness and exploitation.     

Artificial womb technology and clinical translation: Innovative treatment or medical research?

In 2017 and 2019, two research teams claimed ‘proof of principle’ for artificial womb technology (AWT). AWT has long been a subject of speculation in bioethical literature, with broad consensus that it is a welcome development. Despite this, little attention is afforded to more immediate ethical problems in the development of AWT, particularly as an alternative to neonatal intensive care. To start this conversation, I consider whether experimental AWT is innovative treatment or medical research. The research–treatment distinction, pervasive in regulation worldwide, is intended to isolate research activities and subject them to a greater degree of oversight. I argue that there is a tendency in the literature to conceptualize AWT for partial ectogenesis as innovative treatment. However, there are sufficiently serious ethical concerns with experimental AWT that mean that it must not be first used on humans on the basis that it is a ‘beneficial treatment’. First, I outline the prospects for translation of AWT animal studies into treatment for human preterms. Second, I challenge the conceptualizations of experimental AWT as innovative treatment. It must be considered medical research to reflect the investigatory nature of the process and guarantee sufficient protections for subjects. Identifying that AWT is research is crucial in formulating further ethico-legal questions regarding the experimental use of AWT. Third, I demonstrate that clinical trials will be a necessary part of the clinical translation of AWT because of requirements laid out by regulators. I consider the justification for clinical trials and highlight some of the crucial ethical questions about the conditions under which they should proceed.     

How Distinctive is Genetic Information?

There is extensive discussion of the ethical, social, economic and political issues associated with the use of technologies based on DNA techniques. Many of these debates are premised on the assumption that DNA, and the genetic information that may be derived from it, have unique features which raise new social and ethical issues. In this paper it is argued that several of the features associated with DNA which are sometimes regarded as unique are shared with other biological materials. Others owe more to the cultural image of DNA and some of the metaphors used to discuss it in biology and in wider debates than to the biological properties of DNA. The paper discusses the concepts of genetic material and genetic information and the social construction of DNA in relation to forensic DNA databases, paternity testing and genetic testing for disease. The paper concludes by suggesting that there are seven areas where issues related to DNA and genetic information are at least relatively distinct.     

Comparing disease screening tests when true disease status is ascertained only for screen positives

Disease screening is a fundamental part of health care. To evaluate the accuracy of a new screening modality, ideally the results of the screening test are compared with those of a definitive diagnostic test in a set of study subjects. However, definitive diagnostic tests are often invasive and cannot be applied to subjects whose screening tests are negative for disease. For example, in cancer screening, the assessment of true disease status requires a biopsy sample, which for ethical reasons can only be obtained if a subject's screening test indicates presence of cancer. Although the absolute accuracy of screening tests cannot be evaluated in such circumstances, it is possible to compare the accuracies of screening tests. Specifically, using relative true positive rate (the ratio of the true positive rate of one test to another) and relative false positive rate (the ratio of the false positive rates of two tests) as measures of relative accuracy, we show that inference about relative accuracy can be made from such studies. Analogies with case-control studies can be drawn where inference about absolute risk cannot be made, but inference about relative risk can. In this paper, we develop a marginal regression analysis framework for making inference about relative accuracy when only screen positives are followed for true disease. In this context factors influencing the relative accuracies of tests can be evaluated. It is important to determine such factors in order to understand circumstances in which one test is preferable to another. The methods are applied to two cancer screening studies, one concerning the effect of race on screening for prostate cancer and the other concerning the effect of tumour grade on the detection of cervical cancer with cytology versus cervicography screening.