Although informed consent models for prescribing hormone replacement therapy are becoming increasingly prevalent, many physicians continue to require an assessment and referral letter from a mental health professional prior to prescription. Drawing on personal and communal experience, the author argues that assessment and referral requirements are dehumanising and unethical, foregrounding the ways in which these requirements evidence a mistrust of trans people, suppress the diversity of their experiences and sustain an unjustified double standard in contrast to other (...) forms of clinical care. Physicians should abandon this unethical requirement in favour of an informed consent approach to transgender care. (shrink)

Florence Ashley has argued that requiring patients with gender dysphoria to undergo an assessment and referral from a mental health professional before undergoing hormone replacement therapy is unethical and may represent an unconscious hostility towards transgender people. We respond, first, by showing that Ashley has conflated the self-reporting of symptoms with self-diagnosis, and that this is not consistent with the standard model of informed consent to medical treatment. Second, we note that the model of informed consent involved (...) in cosmetic surgery resembles the model Ashley defends, and that psychological assessment and referral is recognised as an important aspect of such a model. Third, we suggest that the increased prevalence of psychiatric morbidity in the transgender population arguably supports the requirement of assessment and referral from a mental health professional prior to undergoing HRT. (shrink)

In a previous article, I argued that assessment requirements for transgender hormone replacement therapy are unethical and dehumanising. A recent response published by the Journal of Medical Ethics criticises this proposal. In this reply, I advance that their response misunderstood core parts of my argument and fails to provide independent support for assessment requirements. Though transition-related care may have similarities with cosmetic surgeries, this does not suffice to establish a need for assessments, and nor do the high (...) rates of depression and anxiety justify assessments, especially given the protective role HRT plays towards mental well-being. (shrink)

Many clinicians are experiencing consumer resistance to the prescription of equine HRT (that is hormone replacement therapy which has been manufactured from mare's urine). In this paper I consider the ethical implications of prescribing these preparations. I decide that patients should have a right to refuse such treatment but also ask whether a prescribing doctor should choose one preparation over another on moral grounds. I determine that there is prima facie evidence to suggest that mares may suffer (...) and that prescription of equine HRT (instead of synthetic oestrogen-oestriol) would therefore have to be justified in terms of either offering greater benefits to the women or offering greater value for money to the health service. I find that there is no substantial evidence to suggest that equine HRT offers unique advantages over and above oestriol. I conclude that it would be preferable for a doctor to recommend the synthetic oestrogen to women who want relief from the symptoms of the menopause and protection from osteoporosis and cardiovascular disease. (shrink)

This article examines and presents examples of contemporary advertising within the medical and health professions that continue the process and organisation of knowledge about women and their reproductive bodies. It draws on feminist and poststructural perspectives to inform a critical evaluation of the visual representations of menopausal women and hormone replacement therapy. These representations work to construct certain definitions of the feminine that sustain and support existing contradictory cultural meanings and values about menopause. I argue that the (...) images continue to misrepresent and define what forms of femininity and sexual gender are desirable and acceptable for menopausal women. The article addresses the problems of gender discrimination and bias within the advertising industry, and illustrates the ways in which readers of visual texts may be influenced by stereotypic assumptions concerning a woman's lived experience of menopause. It illustrates how specific symbolic images directed towards men and women for hormone replacement therapy, testosterone deficiency and sexual dysfunction influence the viewer's decision making and action responses. (shrink)

Until recently, the problem of traumatic brain injury in sports and the problem of performance enhancement via hormone replacement have not been seen as related issues. However, recent evidence suggests that these two problems may actually interact in complex and previously underappreciated ways. A body of recent research has shown that traumatic brain injuries, at all ranges of severity, have a negative effect upon pituitary function, which results in diminished levels of several endogenous hormones, such as growth (...) class='Hi'>hormone and gonadotropin. This is a cause for concern for many popular sports that have high rates of concussion, a mild form of TBI. Emerging research suggests that hormone replacement therapy is an effective treatment for TBI-related hormone deficiency. However, many athletic organizations ban or severely limit the use of hormone replacing substances because many athletes seek to use them solely for the purposes of performance enhancement. Nevertheless, in the light of the research linking traumatic brain injury to hypopituitarism, this paper argues that athletic organizations’ policies and attitudes towards hormone replacement therapy should change. We defend two claims. First, because of the connection between TBI and pituitary function, it is likely many more athletes than previously acknowledged suffer from hormone deficiency and thus could benefit from hormone replacement therapy. Second, athletes’ hormone levels should be tested more rigorously and frequently with an emphasis on monitoring TBI and TBI-related issues, rather than simply monitoring policy violations. (shrink)

The use of aggregated quality of life estimatesin the formation of public policy and practiceguidelines raises concerns about the moralrelevance of variability in values inpreferences for health care. This variabilitymay reflect unique and deeply held beliefs thatmay be lost when averaged with the preferencesof other individuals. Feminist moral theorieswhich argue for attention to context andparticularity underline the importance ofascertaining the extent to which differences inpreferences for health states revealinformation which is morally relevant toclinicians and policymakers. To facilitatethese considerations, we present (...) an empiricalstudy of preferences for the timing andoccurrence of health states associated withhormone replacement therapy (HRT). Sixteenwomen between the ages of 45 and 55 wereenrolled in this pilot study. Theirpreferences regarding five health statesassociated with HRT (menopausal symptoms, sideeffects of HRT, breast cancer, myocardialinfarction, and osteoporosis) were assessed inquantitative terms known as utilities. Twostandard methods, the visual analog scale (VAS) and the standard gamble (SG), were used toassess utility and time preference (calculatedas a discount rate). The wide variability ofresponses underlines the importance oftailoring health care to individual women'spreferences. Policy guidelines whichincorporate utility analysis must recognize thenormative limitations of aggregatedpreferences, and the moral relevance ofindividual conceptions of health. (shrink)

Florence Ashley has responded to our response to ‘Gatekeeping hormone replacement therapy for transgender patients is dehumanising.’ Ashley criticises some of our objections to their view that patients seeking hormone replacement therapy (HRT) for gender dysphoria should not have to undergo a prior psychological assessment. Here we clarify our objections, most importantly that concerning the parity between cosmetic surgery and the sort of intervention Ashley has in mind. Firstly, we show Ashley’s criticism of our (...) comparison is insubstantial. We then examine their comments regarding the analogy between abortion and HRT, and the language of informed consent. We also scrutinize the data upon which Ashley relies to defend the claim that informed consent without assessment always yields positive outcomes, finding this conclusion to be overstated. Finally, even if Ashley’s arguments were vindicated, the claim that the gatekeeping of HRT is motivated by hostility towards transgender people remains unsupported. (shrink)

The Estrogen Elixir: A History of Hormone Replacement Therapy in America by Elizabeth Siegel Watkins is a thoroughly documented cautionary tale of the information and advice offered to women in the perimenopausal period of their life, and the consequences of exposure to sexual hormones on their health and wellbeing.

The Estrogen Elixir: A History of Hormone Replacement Therapy in America by Elizabeth Siegel Watkins is a thoroughly documented cautionary tale of the information and advice offered to women in the perimenopausal period of their life, and the consequences of exposure to sexual hormones on their health and wellbeing.

A Foucauldian discourse analysis is employed to identify how our current understandings of menopause are culturally and historically determined by medical discourse. The polarity of the normal and the abnormal (pathological) became the crux of medical deliberation, where deviation from norms becomes the reason for intervention. Through manifold relations of power and the ‘struggle of knowledges’ medicine derives social authority, influencing social orthodoxies thus normalising menopausal women via discursive constructs. The course of nature in ageing women has been re‐categorised as (...) unnatural. In using the case of hormone therapy (HT) and the emergence of bio‐identical or natural hormones, while deconstructing the premises used in marketing both types of hormone therapy, the tenuousness of scientific claims about these hormones is revealed. Discourses on bio‐identical hormones (BHT) display a reliance on seemingly opposing naturalist and scientific arguments. Menopause, having been constructed as a deficiency disease, required initially chemical hormone replacement and now bio‐identical hormones replacing the mainstream medical solution. The idea of the postmenopausal state as diseased is perpetuated as the basis to suggest therapies to women. This paper suggests that although therapeutic in a few cases, hormone preparations are in fact potentially dangerous lifestyle drugs. (shrink)

The question of why women, in consultation with their physicians, should choose hormone therapy in response to menopause represents a renewed controversy at the beginning of the new century. Conflicting messages regarding the health risks and benefits of HT have been conveyed in the mainstream media, especially information in the media regarding the results of large-scale studies of the health impact of hormone therapy. Women who have been on one or another of the hormone (...) class='Hi'>replacement regimes have been forced to reconsider continuing on HT. Doctors who suggest these hormones to their patients are somewhat confused, as are perimenopausal women who are considering HT. Pharmaceutical companies that produce these compounds are worried, and public health officials are on the defensive.Media coverage of HT research has been extensive. In particular, two large-scale studies, one here in the U.S. and the other in Great Britain, have recently cast a negative light on the use of hormone therapy, after years of routine prescription of HT for menopausal women. (shrink)

Mitochondrial replacement therapy (MRT), also called nuclear genome transfer and mitochondrial donation, is a new technique that can be used to prevent the transmission of mitochondrial DNA diseases. Apart from the United Kingdom, the first country to approve MRT in 2015, Australia became the second country with a clear regulatory path for the clinical applications of this technique in 2021. The rapidly evolving clinical landscape of MRT makes the elaboration and evaluation of the responsible use of this technology (...) a pressing matter. As jurisdictions with less strict or non-existent reproductive laws are continuing to use MRT in the clinical context, the need to address the underlying ethical issues surrounding MRT’s clinical translation is fundamental. (shrink)

Mitochondrial replacement technology (MRT) is an emerging and complex bioethical issue. This treatment aims to eliminate maternal inherited mitochondrial DNA (mtDNA) disorders. For Muslims, its introduction affects every aspect of human life, especially the five essential interests of human beings—namely, religion, life, lineage, intellect, and property. Thus, this technology must be assessed using a comprehensive and holistic approach addressing these human essential interests. Consequently, this article analyses and assesses tri-parent baby technology from the perspective of Maqasidic bioethics—that is, Islamic (...) bioethics based on the framework of Maqasid al-Shariah. Using this analysis, this article suggests that tri-parent baby technology should not be permitted for Muslims due to the existence of third-party cell gametes which lead to lineage mixing and due to the uncertain safety of the therapy itself and because the major aim of the technology is to fulfil the affected couples interest to conceive their own genetically healthy child, not to treat and cure mtDNA disorders sufferers. (shrink)

Gene replacement therapy holds great promise in the treatment of many genetic CNS disorders. This commentary discusses the feasibility of gene replacement therapy in the unique context of the retina, with regard to: (1) the genetics of retinal neoplasia and degeneration, (2) available gene transfer technology, and (3) potential gene delivery vehicles.

For focal neurodegenerative diseases or brain tumors, localized delivery of protein or genetic vectors may be sufficient to alleviate symptoms, halt disease progression, or even cure the disease. One may circumvent the limitation imposed by the blood-brain barrier by transplantation of genetically altered cell grafts or focal inoculation of virus or protein. However, permanent gene replacement therapy for diseases affecting the entire brain will require global delivery of genetic vectors. The neurotoxicity of currently available viral vectors and the (...) transient nature of transgene expression invivomust be overcome before their use in human gene therapy becomes clinically applicable. (shrink)

Mitochondria, the powerhouses of our cells, are essential to life. Normal mitochondrial function is achieved through the cooperative interaction of the nuclear and mitochondrial genomes. New IVF approaches intended to circumvent devastating mitochondrial disease look set to change the ancient pattern of mtDNA inheritance and interaction with unknown consequences.

This article argues that two forms of mitochondrial replacement therapy, maternal spindle transfer and pro-nuclear transfer, are not therapies at all because they do not treat children who are coming into existence. Rather, these technologies merely create healthy children where none was inevitable. Even if creating healthy lives has some value, it is not to be confused with the medical value of a cure or therapy. The article addresses a recent Bioethics article, ‘Mitochondrial Replacement: Ethics and (...) Identity,’ by Wrigley, Wilkinson, and Appleby, who argue that PNT is morally favorable to MST due to the Non-Identity Problem. Wrigley et al. claim that PNT, since it occurs post-conception, preserves the identity of the resulting child, whereas MST, since it occurs pre-conception, is an identity-altering technique. As such, a child born with mitochondrial disease could complain that her parents failed to use PNT, but not MST. The present article argues that the authors are mistaken: both MST and PNT are identity-affecting techniques. But this is of little matter, for we should be cautious in drawing any moral conclusions from the application of the Non-Identity Problem to cases. The article then argues that the authors are mistaken in inferring that PNT is a type of embryonic cure or therapy for children with mitochondrial disease. The article cautions against the mistaken life-saving rhetoric that is common in bioethics discussions of MRTs. (shrink)

We hear that a glass of red wine prolongs life, that alcohol is a carcinogen, that pregnant women should drink not a drop of alcohol. Major medical journals first claimed that hormone replacement therapy reduces the risk of heart disease, then reversed themselves and said it increases the risk of heart disease. What are the effects caused by consuming alcohol or by receiving hormone replacement therapy? These are causal questions, questions about the effects caused (...) by treatments, policies or preventable exposures. Some causal questions can be studied in randomized trials, in which a coin is flipped to decide the treatment for the next experimental subject. Because randomized trials are not always practical, nor always ethical, many causal questions are investigated in non-randomized observational studies. The reversal of opinion about hormone replacement therapy occurred when a randomized clinical trial contradicted a series of earlier observational studies. Using minimal mathematics - high school algebra and coin flips -- and numerous examples, Observation and Experiment explains the key concepts and methods of causal inference. Examples of randomized experiments and observational studies are drawn from clinical medicine, economics, public health and epidemiology, clinical psychology and psychiatry. (shrink)

A clinical trial on mitochondrial replacement therapy is currently being conducted and if this technique proves effective, National Health Service England will fund MRT through the highly specialised services funding stream. This paper considers whether MRT should be publicly funded by the NHS. Given the current financial pressure the NHS is experiencing, a comprehensive discussion is essential. There is yet to be a thorough discussion on MRT funding, perhaps because this is a small-scale issue and presumed to be (...) covered by the HSS budget. However, the source of funding has not been confirmed due to the trial’s incompletion. Upon its completion, reasoned decisions need to be made over the allocation of scarce NHS resources. It is therefore important to consider the following arguments in advance. Three arguments given against NHS funding of MRT will be evaluated. The first argument against NHS funding examines the HSS overspending its budget in an underfunded NHS, suggesting funding must be carefully reprioritised. Second, the ethical issue of allowing public access to a technique with insufficient evidence behind it will be explored. The final point considers the option of privately funding MRT and how this would affect the treatment’s development. After illustrating the weaknesses of such arguments, it will be concluded that MRT should be funded by the NHS. (shrink)

Parkinson's disease patients receiving dopaminergic treatment may experience bursts of creativity. Although this phenomenon is sometimes recognized among patients and their clinicians, the association between dopamine replacement therapy in PD patients and creativity remains underexplored. It is unclear, for instance, whether DRT affects creativity through convergent or divergent thinking, idea generation, or a general lack of inhibition. It is also unclear whether DRT only augments pre-existing creative attributes or generates creativity de novo. Here, we tested a group of (...) PD patients when “on” and “off” dopaminergic treatment on a series of tests of creative problem-solving, and related their performance to a group of matched healthy controls as well as to their pre-PD creative skills and measures of inhibition/impulsivity. Results did not provide strong evidence that DRT improved creative thinking in PD patients. Rather, PD patients “on” medication showed less flexibility in divergent thinking, generated fewer ideas via insight, and showed worse performance in convergent thinking overall than healthy controls. Pre-PD creative skills predicted enhanced flexibility and fluency in divergent thinking when PD patients were “on” medication. However, results on convergent thinking were mixed. Finally, PD patients who exhibited deficits in a measure of inhibitory control showed weaker convergent thinking while “on” medication, supporting previous evidence on the importance of inhibitory control in creative problem-solving. Altogether, results do not support the hypothesis that DRT promotes creative thinking in PD. We speculate that bursts of artistic production in PD are perhaps conflated with creativity due to lay conceptions of creativity. (shrink)

Mitochondrial replacement therapy (MRT) utilises nuclear transfer technology to replace defective mitochondria with healthy ones and thereby minimise the risk of a mitochondrial disease passing from a mother to her child. It promises much but comes with ethical controversy, significant risk of harm and many unknowns. Forming a position on MRT requires accurate information about the current state of knowledge, and an appreciation of the ethical issues at stake. Ethical deliberations will vary depending on the framework used. There (...) are in principle objections to MRT on the grounds of direct harm to human embryos and germline genetic modification. But even without these objections MRT can be weighed in terms of the balance between risks and benefits, alternatives and uncertainties. This paper explores the evidence and lays out the relevant issues to assist such a deliberation. (shrink)

Social media plays an important role in forming, maintaining, and reproducing norms and practices (Flanagan et. al 2008). Content shared on social media has the power to reaffirm certain norms and practices merely by being shared (Caldeira et al., 2018; Burns, 2015; Krijnen & Van Bauwel, 2015). When it comes to questions of identity and questions surrounding representation of certain identity groups in the media, social media content is often taken to play a significant role in the constitution of certain (...) identities (Haimson, 2018, 2021; Frissen et al., 2015; Eickers & Rath, 2021). This chapter specifically explores the role social media plays in trans peoples’ transitioning processes. Transitioning, as understood here, can be social – e.g., performing gender differently via clothing or behavior, using a different name or pronouns – and legal – e.g., changing one’s gender category on formal identification documents, official name changes, and medical – e.g., undergoing hormone replacement therapy or other gender-affirming medical care like gender-reassignment surgeries. Transitioning can encompass all or any combination of these aspects (Bettcher, 2009, 2017). The chapter homes in on the impact that the representation of trans people on social media has on the transitioning processes. Here, questions around bodies and their representation through and with technologies and increasing digitization emerge. One might ask, for example, whether representation on social media platforms facilitates someone’s discovery of their gender identity and/or supports their coming to terms with it. This kind of representation may also provide people before or in transitioning processes with different ways to conceive of their future self. There are numerous social media accounts of trans people documenting their transitioning processes (Horak, 2014; Gauthier & Chaudoir, 2004). Displaying one’s own gender transition online may not only be important to some trans people because they feel like it makes a difference for the community, it may also become a vital part of the transitioning process itself, influencing and shaping the way the transition is taking place (Rawson, 2014; McInroy & Craig, 2015). Indeed, the representation of trans people on social media matters to trans communities and trans individuals because, by seeing images and perceiving narratives of trans people, one might, first, conceive of the possibility of one’s existence as a trans person, including the possibility of embodying another gender, and, second, think of the possibility of representing oneself (as a trans person) too (Cavalcante, 2016; Cannon et al., 2017). Accordingly, this chapter argues that social media can be viewed as a form of corporeal technology that is involved in transitioning processes. Social media can help the individual to reconceive their identity by means of representing themselves to themselves and others online. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Invisible HarmKimberly ZieselmanI’m a 48–year–old intersex woman born with Androgen Insensitivity Syndrome (AIS) writing to share my personal experience as a patient affected by a Difference of Sex Development (DSD). Although I appear to be a DSD patient “success story”, in fact, I have suffered and am unsatisfied with the way I was treated as a young patient in the 1980’s, and the continued lack of appropriate care for (...) intersex people even today.As the Executive Director of the advocacy organization Advocates for Informed Choice and a board member of the AIS–DSD Support Group since 2012, I have heard doctors reference the “silent happy majority” of DSD patients all too often. They speak [End Page 122] of patients who were treated in childhood and went on to live (seemingly) contented lives. It appears however that doctors have drawn this conclusion from the fact that most of their patients have not returned to complain about their treatment. While there is little evidence to support the success doctors claim, there is quite a bit of evidence that suggests my suffering is the norm rather than the exception.Medical professionals would likely include me in that “silent majority,” only seeing a woman who identifies and appears typically female, graduated law school, married for over twenty years, with adopted children and a successful career. And while I have been fortunate in many ways, I no longer want my voice to be presumed buried within that silent majority. Instead, I am speaking out today to tell my story.My StoryAt age 15 I was diagnosed with amenorrhea and referred to a reproductive oncologist who told my parents I had a partially developed uterus and ovaries that would likely soon become cancerous. We were told my vagina was abnormally short and might require surgery in order to have heterosexual intercourse.Neither my parents nor I was ever told I had AIS and XY chromosomes, or that the gonads being removed were testes, not ovaries. I was told I needed a “full hysterectomy” to prevent cancer and hormone replacement therapy. That summer I spent my 16th birthday recuperating from surgery. I spent the next 25 years living a lie.A lie that has had a profound and harmful impact on me.At some level, I knew I was not being told the whole truth. My parents’ and the doctors’ actions signaled to me something more might be going on. But I was afraid to ask questions; my parents were distressed and I didn’t want to cause them any more pain. Over the years I have wondered just how much my parents knew but withheld from me (albeit with good intentions). I sensed something awful was being hidden from me, and I didn’t know whom I could trust.When I asked my doctor if I could meet someone else with my condition, I was told I was different, that there was “nobody” with my medical condition in the world, that my situation was “very rare.” I was told to get on with my life and not talk about my surgery because it wasn’t important; I was healthy and could adopt if I wanted to become a parent. I was told I must take a hormone pill each day for the rest of my life to stay healthy.But what I heard was, “you are not a real woman: you are a damaged freak, so go out and fake the rest of your life and be sure nobody knows your secret.” So that’s what I did. I was a “good girl” and took my pills, didn’t ask questions and did what the men in white coats asked me to do. There was no support provided for either my parents or me. No social workers, no therapists. Perhaps most shockingly, there was no true informed consent.A few years ago I was diagnosed with post-traumatic stress syndrome caused by anxiety I had been harboring for over two decades about my past surgery and fear of getting cancer. I decided to obtain my medical records from the hospital and discover the truth.Covering several pages of... (shrink)

The job of scientists is to try to distinguish what is true from what is false by means of observation and experiment. That job has been made difficult by some philosophers of science who appear to give academic respectability to relativist, and even postmodernist, postures. This chapter suggests that the contributions of philosophers to causal understanding have been unhelpful. It puts the case for randomised studies as the safest guarantee of the reliability of scientific evidence. It uses the case of (...) hormone replacement therapy to illustrate the importance of randomisation, and the case of processed meat and cancer to illustrate the problems that arise in the absence of randomised tests. Finally, it discusses the opposition to randomisation that has come from some philosophers of science. (shrink)

Osteoporosis is characterized by reduced bone density and strength. Bone mass peaks between age 30 and 40 and then declines. This can be accelerated by factors including menopause and insufficient dietary calcium. Hormone replacement therapy (HRT) is currently the standard treatment for osteoporosis. However, growing concern over potential side effects of HRT has driven a search for alternative therapies. A recent report1 reveals a potential alternative to HRT: a gender‐neutral synthetic steroid that increases bone mass and strength (...) without affecting reproductive organs. This compound acts via a novel extranuclear sex steroid receptor signaling mechanism that has important implications for nuclear receptor biology and human health. BioEssays 25:195–199, 2003. © 2003 Wiley Periodicals, Inc. (shrink)

Theorizing interconnections of sexual and racial differences remains a core problematic within feminist theory. In this article the author argues that these connections might in some cases usefully be understood as constituting a chiasmas. The term ‘chiasmas’ is taken from MichËle Le Doeuff’s analysis of the writings of 18th-century physiologist Pierre Roussel. Le Doeuff argues that Roussel’s understanding of sexual difference is chiastic. An examination of contemporary medical and scientific discourses around the menopause and its treatment through hormone (...) class='Hi'>replacement therapy takes the argument onto new ground. The author argues here that menopause-related discourses rely on a chiastic logic that connects sexual difference with racial differences. Identification of such logics may prove useful to feminist analyses of specific entanglements of the logics of sexual and racial differences, in contemporary and historical instances. (shrink)

Advances in medicine in the latter half of the twentieth century have dramatically altered human bodies, expanding choices around what we do with them and how they connect to other bodies. Nowhere is this more so than in the area of reproductive technologies. Reproductive medicine and the laws surrounding it in the UK have reconfigured traditional boundaries surrounding parenthood and the family. Yet culture and regulation surrounding RTs have combined to try to ensure that while traditional boundaries may be pushed, (...) they are reconstructed in similar ways. This paper looks at the most recent RT to be permitted in the UK, mitochondria replacement therapy. Despite controversial media headlines surrounding the technique, MRT is in fact an example of how science and regulation seek to expand models of traditional relatedness in a way that doesn’t challenge the existing order. Yet, like other RTs, while attempts are made to ensure it doesn’t push traditional boundaries too far, fissures and inconsistencies appear in law and culture, which give interesting insights into how genetics, parentage and identity are being mediated in new but familiar ways. (shrink)

Rereading Renée C. Fox's “A Sociological Perspective on Organ Transplantation and Hemodialysis,” published in 1970, one is likely to be struck more by continuity than by change. The most pressing of the social, policy, and ethical concerns that Fox raised remain problematic fifty years later. We still struggle with scientific and clinical uncertainty, with the boundary between experimentation and therapy, and with the cost of organ replacement therapies and disparities in how they are allocated. We still have an (...) imperfect understanding of transplant immune responses. We still debate when a potential donor “actually” dies, and we still seem to think better empirical criteria could harmonize the diverse religious, cultural, and socioeconomic values of patients, providers, third‐party payers, and policy‐makers. Organ transplantation was for Fox both a particular case unfolding in time and an entryway for discussing the difficult moral questions presented by many new medical technologies in a context of high demand and limited resources. (shrink)

In this article, an ethical analysis of an educational programme on renal replacement therapy options for patients and their social network is presented. The two main spearheads of this approach are: (1) offering an educational programme on all renal replacement therapy options ahead of treatment requirement and (2) a home-based approach involving the family and friends of the patient. Arguments are offered for the ethical justification of this approach by considering the viewpoint of the various stakeholders (...) involved. Finally, reflecting on these ethical considerations, essential conditions for carrying out such a programme are outlined. The goal is to develop an ethically justified and responsible educational programme. (shrink)

In this paper I attempt to show that the doctrine of informed consent, as practiced in the relationships between physicians and patients, often does not fulfill its main purpose, i.e., it does not safeguard the interests, rights, and dignity of patients. This happens because of clinicians' skepticism about the existence of the right to informed consent, patients' disinclination to make decisions, the current nature of health care, and the absence of clear guidelines about implementing informed consent. In the context of (...) this paper informed consent refers to the principle of respect for autonomy. (shrink)

The decision for women to go on hormone therapy remains controversial. An historical oscillation of beliefs exists related in part to expectations of the medicinal value of HT over longer-term use beyond the initial peri-menonpausal period. Studies thought to resolve issues surrounding the efficacy of HT were perhaps overstated as confusion still permeates the decision making with regard to HT. Overzealous advertising and exaggerated understanding of the results undermine patient and physician decision making. There remains no magic bullet (...) with regard to HT. What remains is still the possibility of HT longer-term efficacy on diverse end organ systems with pockets of clinical and scientific ambiguity while working to engender reasonable expectations. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Standing at the Intersections: Navigating Life as a Black Intersex ManSean Saifa WallAs I sit down to write this narrative, my mind is reflecting on the past year. This year has seen numerous protests against state–sanctioned violence with the declaration that “Black Lives Matter”. As a Black intersex man, I have witnessed the impact of state–sanctioned violence on my family and my community, both from the police state and (...) medical community. I charge the police state and the medical community with state– sanctioned violence: Each targets non–normative bodies—the former through incarceration and execution, and the latter by means of surgical and hormonal intervention. As a Black intersex man, I stand at the intersection bearing witness to how this violence has incarcerated my friends and loved ones as well as being subjected to medically unnecessary surgical intervention. Although this is where I stand now, both socially and politically, I have not always existed here.I was born in the winter of 1978 at Columbia–Presbyterian Hospital in New York City. I was the youngest of five children and one of three children in my family who were born with an intersex trait now known as androgen insensitivity syndrome (AIS). At the time, AIS was referred to as “testicular [End Page 117] feminization syndrome.” Upon receiving my medical records years later at the age of twenty–five, I noticed scribbling and a barrage of notes indicating the process by which the doctors assigned my gender as female. Although I had ambiguous genitalia, which caused some initial confusion among the doctors, XY chromosomes were not enough for me to be raised as male. My mother was told I would be raised as a girl and, according to the medical records, “function as such.”Unlike my sisters who were also born with AIS, my mom was not swayed by the surgical recommendations doctors made about my body. As a matter of protocol, my sisters’ gonads were removed in infancy, however, my mom made the decision that my testes would remain with me until they had to be removed.Because of intense pain in my groin area, my testicles were removed when I was thirteen years old. The pain that I felt following the surgery was perhaps the worst pain that I have experienced in my entire life. After surgery, my pediatrician prescribed estrogen and Provera as a hormonal replacement regimen. Fatty deposits changed the shape and contours of my face. Once robust and chiseled thighs now harbored cellulite. The beginnings of facial hair and prominent body hair became wispy and nonexistent. What was hard and defined became soft.At no point did anyone ask me what I wanted to do with my body.I actually missed the effects of my natural testosterone such as a deepening voice, increased hair and muscle mass; when I asked if I could take both testosterone and estrogen after surgery, my mother remarked, “You would look too weird.”The hormone therapy was coupled with intense social conditioning. I feel as if the social conditioning for young women raised with AIS is suffocating. When doctors prescribed hormones for me to take, my mother constantly reminded me how “beautiful” the little yellow pills would make me. As a means of reassurance, my pediatrician told my mom that “a lot of fashion models” have AIS and that I would most certainly be beautiful. In our dominant US culture, gender norms can already be oppressive, but for women with AIS, there is the impact of gender norms and the underlying fear that women with AIS are not really women since they have XY chromosomes. I did not succumb to the pressure to be more feminine, but actually gravitated toward masculinity. Before transitioning to live as a man, I considered myself a butch woman. When I came out of the closet at fourteen years old and presented as a masculine young woman, I never felt safe. Because I dated women who were more feminine than I, my relationship with these women seemed threatening to men who repeatedly reminded me through harassment and threats that “I was not a man.” Of course, I wasn’t trying to be a... (shrink)