Financial gerontology can be defined as investigating relations between finances and aging. Authors such as Neal E. Cutler, Kouhei Komamura, Davis W. Gregg, Shinya Kajitani, Kei Sakata, and Colin McKenzie affirm that financial literacy is an effect of aging with concern about the issue of finances, as well as stating that it is the effect of longevity and aging on economies or the financial resilience of older people.

The U.S. Food and Drug Administration's drug advisory committees provide expert assessments of the safety and efficacy of new therapies considered for approval. A committee hears from a variety of speakers, from six groups, including voting members of the committee, FDA staff members, employees of the pharmaceutical company seeking approval of a therapy, patient and consumer representatives, expert speakers invited by the company, and public participants. The committees convene at the request of the FDA when the risks and harms (...) of novel products are not immediately clear, and their final decisions carry significant weight, as most therapies that receive advisory committee approval are subsequently approved by the FDA. In recent years, across a series of diverse publications, the financial conflicts of interest of each category of participants in the meetings have been investigated. Here, we summarize these findings and their ethical implications, focusing on the FDA Oncologic Drugs Advisory Committee, and we suggest ways to move toward more transparent and impartial advisory committee meetings. (shrink)

The financial toxicity of biotherapeutic treatments is examined. Kymriah, a new gene therapy, has a list price of $475,000 per treatment; Yescarta, from Kite Pharma, costs $373,000 per treatment. Such costs are a significant burden on patients, patients’ families, payers, health care systems, and communities. Studies have shown that financial toxicity—the effect of excessive treatment cost—diminishes patients’ quality of life, compliance, and survival. Some pharmaceutical companies promote outcomes-based pricing and other strategies to offset financial toxicity, but (...) these approaches have not been shown to reduce burdens. Catholic teaching holds that the benefits of treatment should outweigh its burdens, and that burdensome treatments are not obligatory. The financial toxicity of treatments should be included in the ethical assessment of burdens on the patient. (shrink)

Neurobiology-based interventions for mental diseases and searches for useful biomarkers of treatment response have largely failed. Clinical trials should assess interventions related to environmental and social stressors, with long-term follow-up; social rather than biological endpoints; personalized outcomes; and suitable cluster, adaptive, and n-of-1 designs. Labor, education, financial, and other social/political decisions should be evaluated for their impacts on mental disease.

The reliability of clinical practice guidelines has been disputed because guideline panel members are often burdened with financial conflicts of interest. Current recommendations for COI regulation advise not only detailed declaration but also active management of conflicts. To continuously assess COI declaration and management in German guidelines we established the public database LeitlinienWatch. We analyzed all German guidelines at the highest methodological level that included recommendations for pharmacological therapy according to five criteria: declaration and assessment of COI, composition (...) of the guideline development group, independence of the coordinators and lead authors, imposed abstentions because of COI and public external review. Each criterion was assessed using predefined outcome categories. Most guidelines contained a detailed declaration of COI. However, none of the guidelines provided full transparency of COI assessment results. The guideline group was composed of a majority of participants with COI in 55% of the guidelines, no guideline was free of participants with COI. Only 9% of guidelines had coordinators and lead authors without any financial COI. Most guidelines did not provide a rule for abstentions for participants with COI. In 21% of guidelines there was a rule, but abstentions were either not practiced or not documented, whereas in 7% partial abstentions and in 2% complete abstentions were documented. Two thirds of the guideline drafts were not externally reviewed via a public website. COI are usually documented in detail in German guidelines of the highest methodological level. However, considerable improvement is needed regarding active management of COI, including recruitment of independent experts for guideline projects, abstention from voting for participants with COI and external review of the guideline draft. We assume that the publicly available ratings on GuidelineWatch will improve the handling of conflicts of interest in guideline development. (shrink)

Intellectual Capital is a driving force behind the financial performance of non-financial firms. Investing in intellectual and physical capital allows companies to optimize their financial performance by maximizing resource utilization. This study aims to determine whether IC efficiency impacts the financial performance of listed Pakistani and Indian companies between 2010 and 2020. Return on Assets and Return on Equity are used to calculate financial performance, and IC is calculated using the modified Value-Added Intellectual Coefficient model. (...) Regression analysis is performed using the STATA software developed by the South Texas Art Therapy Association. Human Capital, Structural Capital, and Capital Employed have a significant impact on Pakistani and Indian firms’ financial performance. Resource-based theory supports these findings. The findings should provide management with a prompt to improve financial performance and emphasize the importance of IC. A rare study has addressed the impact of IC on firm financial performance using the MVAIC model, rather than the VAIC model, in Pakistan and India. (shrink)

There is no doubt that a negative perception of financial risk and a lack of credit risk management adversely impact business growth and business owners’ wellbeing. Past studies suggest that most Nigerian traders have poor risk perceptions and manage risk poorly. A business coaching program within rational-emotive behavior therapy framework was evaluated in order to determine its effects on financial risk perception and credit risk management among Nigerian traders. This study used an open-label parallel randomized control design. (...) This 8-weeks coaching program had 60 traders in the REBT-based business coaching group and 59 traders in the control group. The mixed-model repeated measures ANOVA was utilized for analysis of the study data. Results show that relative to a control group, traders’ financial risk perception [F = 637.29, p < 0.001, ω2 = 0.69] and credit risk management [F = 795.51, p < 0.001, ω2 = 0.80] significantly improved after participating in REBT-based business coaching program. This study shows that REBT-based business coaching program is integral to increasing financial risk perception and credit risk management among Nigerian traders. This study contributes to the advancement of business coaching program within the rational-emotive behavior therapy framework for market traders, and its application in similar situations. The study considered the benefits of business coaching program for market traders from a developing country, which is a rarely studied group. It is highly recommended that professionals study the relationship between REBT-based business coaching and economic decision-making within various organizational contexts. (shrink)

The left ventricular assist device was originally designed to be surgically implanted as a bridge to transplantation for patients with chronic end-stage heart failure. On the basis of the REMATCH trial, the US Food and Drug Administration and the US Centers for Medicare & Medicaid Services approved permanent implantation of the left ventricular assist device as a destination therapy in Medicare beneficiaries who are not candidates for heart transplantation. The use of the left ventricular assist device as a destination (...) therapy raises certain ethical challenges. Left ventricular assist devices can prolong the survival of average recipients compared with optimal medical management of chronic end-stage heart failure. However, the overall quality of life can be adversely affected in some recipients because of serious infections, neurologic complications, and device malfunction. Left ventricular assist devices alter end-of-life trajectories. The caregivers of recipients may experience significant burden (e.g., poor physical health, depression, anxiety, and posttraumatic stress disorder) from destination therapy with left ventricular assist devices. There are also social and financial ramifications for recipients and their families. We advocate early utilization of a palliative care approach and outline prerequisite conditions so that consenting for the use of a left ventricular assist device as a destination therapy is a well informed process. These conditions include: (1) direct participation of a multidisciplinary care team, including palliative care specialists, (2) a concise plan of care for anticipated device-related complications, (3) careful surveillance and counseling for caregiver burden, (4) advance-care planning for anticipated end-of-life trajectories and timing of device deactivation, and (5) a plan to address the long-term financial burden on patients, families, and caregivers. Short-term mechanical circulatory devices (e.g. percutaneous cardiopulmonary bypass, percutaneous ventricular assist devices, etc.) can be initiated in emergency situations as a bridge to permanent implantation of ventricular assist devices in chronic end-stage heart failure. In the absence of first-person (patient) consent, presumed consent or surrogate consent should be used cautiously for the initiation of short-term mechanical circulatory devices in emergency situations as a bridge to permanent implantation of left ventricular assist devices. Future clinical studies of destination therapy with left ventricular assist devices should include measures of recipients' quality of end-of-life care and caregivers' burden. (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)

The aim of this study was to investigate the ethical dilemma of prioritising financial resources to expensive biological therapies. For this purpose, the four principles of biomedical ethics formulated by ethicists Tom Beauchamp and James Childress were used as a theoretical framework. Based on arguments of justice, Beauchamp and Childress advocate for a health care system organised in line with the Danish system. Notably, our study was carried out in a Danish setting.

Biotechnology now makes it possible to enhance human traits as well as treat illnesses and disorders. What it has neglected to establish, however, is a clear line between these two functions, a distinction between what counts as treatment or therapy and what counts as enhancement. The bulk of the literature on enhancements focuses on the ethics of enhancements, not on the criteria that qualify a procedure as an enhancement . While the ethical questions regarding the desirability of enhancements are (...) certainly worthy of consideration, so is the issue of what constitutes an enhancement versus a form of treatment or therapy. Scholars have debated the issue of whether a distinction between therapy and enhancement exists, but the placement of that distinction has not yet been sufficiently addressed . Much like the field of bioethics itself, my study of this issue is a work in progress, so this paper will ask and explore questions relevant to this topic without providing answers to all of them. Nonetheless, they are important questions to ask with important implications for the future of bioethics. This paper will describe the line between enhancement and therapy, map the terrain and define the terms. It will also investigate where the line is at present, and where and how it has been set by legislation and private companies. It will then illustrate the issues, using two examples, to demonstrate the difficulties and complexities involved. Finally, it will explore the implications of the line for society’s financial as well as physical interests, and for healthcare access in the United States. It will conclude by considering the open question of how a company, a government, and a just society should go about setting the line. I hope that asking the questions and exploring their complexities will help draw attention to and prompt serious consideration of the placement of the line between therapy and enhancement. (shrink)

The transition of novel and potentially promising medical therapies into their initial human clinical trials can engender conflicting pressures. On the one side, because Phase I trials raise greater ethical and human protection challenges than later stage clinical trials, there is a need to proceed cautiously. This is particularly the case for Phase I trials with a novel therapy being tested in humans for the first time, usually termed first-in-human (FIH) trials, especially if the FIH trial involves significant risks. (...) On the other side, scientists interested in having their research validated, corporations with a financial interest in the field, and potential patients and patient support groups desirous of having .. (shrink)

Renal replacement therapy is the indicated treatment for individuals with chronic kidney disease (CKD) to survive. However, not all sick people have access to the same treatment. This study compares renal care in two developing countries with different health systems. Specifically, it explores hemodialysis treatment from the perspective of low‐income individuals. A qualitative, comparative study was performed in Brazil and Mexico. Using purposive sampling, the research was based on open‐ended interviews with nineteen participants with kidney failure undergoing hemodialysis treatment (...) in public hospitals and ten relatives. According to our results, Brazilian participants perceived hemodialysis care as satisfactory because of health personnel courtesy as well as free access to dialysis treatment, prescription drugs, hospitalization and transportation. However, they reported deficiencies in the care they were receiving due to shortages of specialists, prescription drugs, laboratory tests and transportation. Mexican participants, in contrast, highlighted the catastrophic costs of medical care because they had no free access to renal therapy, nor adequate financial resources. Our findings suggest that low‐income Brazilian CKD sufferers experience renal care differently, as they are more satisfied and face less obstacles with hemodialysis compared with those of Mexico. More studies on the topic are needed. (shrink)

The global financial crisis beginning in 2008 has encouraged the revitalization of a wide spectrum of leftist theorizing, but arguably the most audacious is that of ‘accelerationism’. Left-accelerationism sees the intensification of certain tendencies in late capitalist society as a way to escape its gravitational orbit and ‘repurpose’ the very material infrastructure of capitalism itself, to universally emancipatory ends. The central task here is to engage accelerationism with a thinker of the post-Autonomist tradition, Franco ‘Bifo’ Berardi. Contrary to Williams (...) and Srnicek, co-authors of the #Accelerate manifesto, Bifo asserts that acceleration per se only augments the power and dynamism of capital, and posits instead a ‘post-politics’ of ironic detachment, aesthetic cultivation, and ‘therapy’. Contrasting Bifo and accelerationism clarifies each of their assumptions and core arguments, and points the way to a more nuanced perspective on these issues, in a contemporaneous moment marked in equal measure by inestimable threat and liberatory promise. (shrink)

Rare genetic diseases collectively impact millions of individuals in the United States. These patients and their families share many challenges including delayed diagnosis, lack of knowledgeable providers, and limited economic incentives to develop new therapies for small patient groups. As such, rare disease patients and families often must rely on advocacy, including both self-advocacy to access clinical care and public advocacy to advance research. However, these demands raise serious concerns for equity, as both care and research for a given disease (...) can depend on the education, financial resources, and social capital available to the patients in a given community. In this article, we utilize three case examples to illustrate ethical challenges at the intersection of rare diseases, advocacy and justice, including how reliance on advocacy in rare disease may drive unintended consequences for equity. We conclude with a discussion of opportunities for diverse stakeholders to begin to address these challenges. (shrink)

While gender and race often are considered socially constructed, this book argues that they are physiologically constituted through the biopsychosocial effects of sexism and racism. This means that to be fully successful, critical philosophy of race and feminist philosophy need to examine not only the financial, legal, political and other forms of racist and sexism oppression, but also their physiological operations. Examining a complex tangle of affects, emotions, knowledge, and privilege, The Physiology of Sexist and Racist Oppression develops an (...) understanding of the human body whose unconscious habits are biological. On this account, affect and emotion are thoroughly somatic, not something "mental" or extra-biological layered on top of the body. They also are interpersonal, social, and can be transactionally transmitted between people.Ranging from the stomach and the gut to the hips and the heart, from autoimmune diseases to epigenetic markers, Sullivan demonstrates the gastrointestinal effects of sexual abuse that disproportionately affect women, often manifesting as IBS, Crohn's disease, or similar functional disorders. She also explores the transgenerational effects of racism via epigenetic changes in African American women, who experience much higher pre-term birth rates than white women do, and she reveals the unjust benefits for heart health experienced by white people as a result of their racial privilege. Finally, developing the notion of a physiological therapy that doesn't prioritize bringing unconscious habits to conscious awareness, Sullivan closes with a double-barreled approach for both working for institutional change and transforming biologically unconscious habits. The Physiology of Sexist and Racist Oppression skillfully combines feminist and critical philosophy of race with the biological and health sciences. The result is a critical physiology of race and gender that offers new strategies for fighting male and white privilege. (shrink)

In this chapter, I describe my “post-diagnosis” experiences as the parent of an autistic child, those years in which I tried, but failed, to make sense of the overwhelming and often nonsensical information I received about autism. I argue that immediately after being given an autism diagnosis, parents are pressured into making what amounts to a life-long commitment to a therapy program that (they are told) will not only dramatically change their child, but their family’s financial situation and (...) even their entire mode of existence. Moreover, despite information overload, many treatment programs for autism rely on empty jargon and make completely unrealistic promises, so parents are left feeling overwhelmed and panicked. Even well respected therapy programs encourage parents to spend liberally. Indeed, autistic therapists, who help construct what I refer to as the Culture of Autism, advise parents to commit to a minimum of 35 to 45 hours of intensive therapy every week. The implications are clear: for a parent who works full-time, their autistic child becomes a second full-time job. Autism is big business right now, and therapists are pushing parents to the brink of desperation. So it is not too surprising that there is a desperate cry for a more permanent solution—which is why researchers seek to cure autism. But there are two ways to conceptualize cure. A Therapeutic Cure model (TC) conceives of a cure as a beneficial treatment for the patient that eliminates or ameliorates the harms of the disease or condition. But the notion of a therapeutic cure for autism is highly implausible, given the complexities of autism. Indeed, at this point, the vast majority of researchers have come to the conclusion that the idea of a therapeutic cure for autism is simply a non-starter. Therefore the bulk of research seeking a cure for autism focuses instead on a second approach, which I refer to as the Negative Eugenics Cure model (NEC). With this model, the intention is to eliminate the disease or condition without regard for the health or well-being of the organism carrying the disease or condition. So, with regard to autism, researchers are focusing on identifying genetic markers for autism that can be detected in utero, or in embryos, so that autistic fetuses can be eliminated and autism eradicated by preventing the existence of autistic individuals. I review both models and argue that both fail to provide convincing arguments that the “solution” either offers is desirable. Both rest on the assumption that autism renders a life not worth living which, all things considered, is false. Instead of pushing to cure autism, an idea pervasive in this Culture of Autism, I contend that autistics are individuals with lives worth living. Moreover, rather than expend millions on research to search for the means to eliminate autism, we should instead expend our resources to ensure autistic individuals have access to support they may need. If the phenomenology of autism were better understood and appreciated, the panicked demand for a cure for autism might abate and perhaps autism could be seen as having value in and of its own right. (shrink)

Health systems that provide for universal patient access through a scheme of prepayments—whether through taxes, social insurance, or a combination of the two—need to make decisions on the scope of coverage that they secure. Such decisions are inherently controversial, implying, as they do, that some patients will receive less than comprehensive health care, or less than complete protection from the financial consequences of ill-heath, even when there is a clinically effective therapy to which they might have access.Controversial decisions (...) of this sort call for a public justification for covering or not covering a given treatment. Priority-setting agencies play a key role in providing such a justification. A recent... (shrink)

The death of Jesse Gelsinger in 1999 during a gene therapy trial raised many questions about the ethical review of medical research. Here, the author argues that the principle of justice is interpreted too narrowly and receives insufficient emphasis and that what we permit in terms of bodily invasion affects the value we place on individuals. Medical research is a societally supported activity. As such, the author contends that justice requires that invasive medical research demonstrates sufficiently compelling societal benefit. (...) Many consider this societal benefit to be self evident. However, medical research is a complex activity; it yields new treatments but also creates financial rewards and affects health resource allocation. As research evolves into a multibillion pound, multinational enterprise, justice requires a much broader analysis of societal benefit. Without such evaluation we risk undermining the value of bodily integrity and of research participants. (shrink)

The moral case for experimentation on animals rests both on the goods to be realized, the evils to be avoided thereby, and on the duty to respect persons and to secure them in the enjoyment of their natural moral rights. Some experimentation on animals presents no problems of justification as it involves no harm at all to the animals which are the subject of experiments and is such as to seek to achieve an advance in knowledge. Experiments on non-sentient animals, (...) like those on plant life, may harm the subjects but in ways that in themselves need raise no morally significant issues. Moral issues may arise if the subjects of experiments are members of an endangered species and for like reasons but not simply on account of the harm caused by the experiment to the subjects. Other experimentation on animals is to be justified solely in terms of its benefit to animals, even though it involves harm to the animals upon which experiments are performed. There are many poisons and diseases to which animals and not human beings are exposed which give rise to the need for experiments to determine effective therapies, treatments, or other remedies. Examples include annual rye grass toxicity, foot-and-mouth disease, the many fowl diseases, and so on. Human beings commonly have an interest in successfully experimenting to find effective remedies, either a financial interest as with farm animals, race horses and the like, amusement interest as with pets, or a concern not to have a species or variety become extinct. The moral case for such experiments may be strengthened by reference to such interests if they in turn have a moral basis, but generally it does not depend for its validity on this. Other experimentation that harms the animals involved is to be justified in terms of the benefits to be realized and evils lessened for persons by the knowledge and the use of the knowledge gained, where the knowledge is used to secure the enjoyment of their moral rights by persons. Much experimentation benefits both persons, contributing to the securing of their enjoyment of their moral rights, and animals which do not possess moral rights, and is to be morally justified on both counts. Obviously a great amount of experimentation occurs today which does not admit of justification along any of these lines, and hence, is such that it must be condemned as being morally wrong. (shrink)

While the clinical promise of much stem cell research remains largely theoretical, patients are nonetheless pursuing unproven stem cell therapies in jurisdictions around the world—a phenomenon referred to as “stem cell tourism.” These treatments are generally advertised on a direct-to-consumer basis via the Internet. Research shows portrayals of stem cell medicine on such websites are overly optimistic and the claims made are unsubstantiated by published evidence. However, anecdotal evidence suggests that parents are pursing these “treatments” for their children, despite potential (...) physical and financial risk. Physicians are in a unique position as they can be expected to be involved in, or privy to, such decisions. In this paper, we consider what duties physicians may have toward minor patients whose parents/guardians wish to engage in stem cell tourism on their behalf. We use the Canadian perspective to address the broadly relevant issues raised by this trend. (shrink)

Capitalist socialism? -- Crisis as shock therapy -- The structure of enemy propaganda -- Human, all too human-- -- The "new spirit" of capitalism -- Between the two fetishisms -- Communism, again! -- The new enclosure of the commons -- Socialism or communism? -- The "public use of reason" -- --in Haiti -- The capitalist exception -- Capitalism with Asian values-- in Europe -- From profit to rent -- "We are the ones we have been waiting for.".

Early scientific investigation of the reproductive process was neither a cause nor a direct result of changing social attitudes toward sex. It was instead part of the continuing search, initiated in the 1890s, to discover internal secretions that might be isolated and prove useful in therapy. Laboratory scientists, nonetheless, were among the many groups altering understanding of human sexual physiology in the first quarter of this century. The new data they generated regarding the dependence of human sexuality and fertility (...) on chemical substances elaborated by the ovaries and testes became part of the evidence which hastened that quite tortuous transformation called the sexual revolution.Increasingly, as social reformers demanded more information about human reproduction, scientists were asked to provide it, and scientific concerns were shaped in the process. In the 1920s, especially in the United States, studies of the physiology of reproduction began to receive financial backing from social reformers. This was because for many, contraception had become a fact of life. Expression rather than repression of sexuality was accepted as being necessary to the stability of the fundamental social unit, the family. Theoretical and practical incentives for continued study of the reproductive process could thus be joined in common effort. This convergence of goals occurred just as the gonadal hormones were being isolated. The 1920s, therefore, mark an important juncture in the congruence of interests represented by theoretical science on the one hand and expressed social needs on the other.As a result of this convergence of interests and goals, physiologists gained a new realm of influence, claiming authoritative knowledge over a subject which once had been allocated to the priest and then, by the mid-nineteenth century, transferred to the physician. Since that formative period other research scientists, such as Alfred Kinsey and, more recently, William Masters and Virginia Johnson, have explored that niche and applied the scientific method to study of behavioral and physiological aspects of the human sexual response. They have been beset by many of the same tactical issues that confronted the earliest investigators of reproductive physiology. The definition, specification, and measurement of phenomena relating to sexual and reproductive activity have been as inherently difficult as they have been taboo.79Traditional resistance to scientific study of the reproductive process was overcome in the early twentieth century by the expectation that this particular line of inquiry would lead to understanding and therefore medical control of the complex of disorders—physiological, psychological, and social — associated with the generative glands. Early investigators, particularly in Britain, did not wish to be social reformers. Especially in the 1910s such a stance would have threatened their credibility in a field determined to establish itself as a theoretical science. Once scientific progress was assured, as it was from about 1920, new problems opened for investigation and began to be motivated by social needs as well as by the concerns of a rapidly developing science. Especially in the United States new resources encouraged this work, allowing development of the specialized focus on gonadal hormones represented by the emerging field of reproductive endocrinology. (shrink)

The drive for cost-effective use of medical interventions has advantages, but can also be challenging in the context of end-of-life palliative treatments. A quality-adjusted life-year (QALY) provides a common currency to assess the extent of the benefits gained from a variety of interventions in terms of health-related quality of life and survival for the patient. However, since it is in the nature of end-of-life palliative care that the benefits it brings to its patients are of short duration, it fares poorly (...) under a policy of QALY-maximization. Nevertheless, we argue that the goals of palliative care and QALY are not incompatible, and optimal integration of palliative care into the calculation of QALY may reveal a mechanism to modify considerations of how optimal quality of life can be achieved, even in the face of terminal illness. The use of QALYs in resource allocation means that palliative care will always compete with alternative uses of the same money. More research should be conducted to evaluate choices between palliative care and more aggressive therapies for the terminally ill. However, current limited data show that investing in palliative care makes more sense not only ethically, but also financially. (shrink)

Ongoing research in the fields of genetics and biotechnology hold the promise of improved diagnosis and treatment of genetic diseases, and potentially the development of individually tailored pharmaceuticals and gene therapies. Difficulty, however, arises in determining how these services are to be evaluated and integrated equitably into public health care systems such as Canada's. The current context is one of increasing fiscal restraint on the part of governments, limited financial resources being dedicated to health care, and rising costs for (...) new health care services and technologies. This has led to increasing public debate in the last few years about how to reform public health care, and whether we should prohibit, permit or perhaps even encourage private purchase of health care services. ;In Canada, some of these concerns have crystallized around the issue of gene patents and commercial genetic testing, in particular as illustrated by the case of Myriad Genetics' patented BRACAnalysis test for hereditary breast and ovarian cancer. While most Canadians who currently access genetic services do so through the public health care system, for those with the means, private purchase is becoming an option. This situation raises serious concerns---about justice in access to health care; about continued access to safe and reliable genetic testing supported by unbiased patient information; and about the broader effects of commercialization for ongoing research and the Canadian public health care system. Commercial genetic testing presents a challenge to health care professionals, policy analysts, and academics concerned with the social, ethical and policy implications of new genetic technologies. Using the Myriad case as an exemplar, tools from moral philosophy, the social sciences, and health policy and law will be brought to bear on the larger issues of how as a society we should regulate commercial research and product development, and more coherently decide which services to cover under public health insurance and which to leave to private purchase. Generally, the thesis is concerned with the question of "how best to bring capital, morality, and knowledge into a productive and ethical relationship". (shrink)

Suppose we accept prenatal diagnosis and the selective abortion of fetuses that test positive for severe genetic disorders to be both morally and socially acceptable. Should we consider prenatal diagnosis and selective abortion (or other genetic interventions such as preimplantation diagnosis, genetic therapy, cloning, etc.) for nontherapeutic purposes to be acceptable as well? On the one hand, the social aims to promote liberty in general, and reproductive liberty in particular, provide reason for thinking that individuals should be free to (...) make their own decisions about whether or not to employ whatever genetic services might be developed and offered by private enterprise. On the other hand, interventions aimed at enhancement would (in many cases) presumably only be available to those who are financially fortunate. A worry is that unequal access to enhancements that provide competitive advantages to offspring will further and more permanently increase existing unjust disparities between the haves and have-nots. The aim to promote liberty might thus conflict with the social aim of equality. An additional worry is that the development and provision of nontherapeutic genetic interventions would drain limited medical resources away from therapeutic purposes which would ultimately be more fruitful. The promotion of liberty might also thus conflict with the aim to promote aggregate utility. Assuming there is no reason to think that the promotion of liberty should be given absolute priority over both equality and aggregate utility, we need to think more about how to make trade-offs between these three legitimate social aims. (shrink)

Objectives: To describe the concerns and priorities of key stakeholders in a developing country regarding ethical obligations held by researchers and perceptions of equity or “what is fair” for study participants in an HIV/AIDS clinical drug trial. Design: Qualitative study with focus groups. Setting: Teaching and referral hospital and rural health centre in western Kenya. Participants: Potential HIV/AIDS clinical trial participants, clinician researchers, and administrators. Results: Eighty nine individuals participated in a total of 11 focus groups over a four month (...) period. The desire for continued drug therapy, most often life long, following an HIV/AIDS clinical trial was the most common priority expressed in all focus groups. Patients with and without HIV/AIDS also thought subsidisation of drug therapies and education were critical forms of compensation for clinical trial participation. Financial incentives were considered important primarily for purchasing drug therapy as well as obtaining food. Patients noted a concern for the potential mismanagement of any money offered. Clinician researchers and administrators felt strongly that researchers have a moral obligation to participants following a trial to provide continued drug therapy, adverse event monitoring, and primary care. Finally, clinician researchers and administrators stressed the need for thorough informed consent to avoid coercion of study participants. Conclusions: Kenyan patients, clinician researchers, and administrators believe that it would be unfair to stop antiretroviral therapy following an HIV/AIDS clinical trial and that researchers have a long term obligation to participants. (shrink)

This paper will explore both the ways in which the practices of self-care, specifically related to mental health, have emerged as responses to the increasingly precarious status of life after the economic shocks of the Global Financial Crisis, whilst also looking to the work of Silvia Federici and Kathi Weeks to propose models for immanent critique of these practices. Although it cannot be taken as a pure origin, post-GFC mental health discourse has increasingly seen mental health discussed as a (...) form of resilience to precarity. Furthermore, practices of self-care, and psychological forms of treatment such as cognitive behavioural therapy have become vehicles for the intensification of personal resilience in the face of systemic crisis. If self-care involves an inward looking and depoliticised subject, surely political emancipation lies elsewhere. The possibility of some alternative to our present state of affairs, where self-care increasingly appears as a form of ‘voluntary servitude,’ that is to say, a form of self-subjugation with serious political risks, must surely be taken as a continual project for those engaged in critical inquiry. Then again, to suggest that those engaging in self-care are simply reproducing neoliberal subjectivity would surely miss the ways in which such forms of self-preservation might appear as unavoidable for the individuals in question. Through an engagement with their work—and one that draws parallels between their strategic critiques of reproductive labour broadly speaking, and the more specific area of mental illness and neoliberal governmentality—the question of the “necessity” of self-care will be brought into alignment with the possibilities of its practicality. (shrink)

Mental health professionals face many complex questions in the course of their work with clients and patients. Among the most difficult are dilemmas that involve ethical issues. This book presents a forthright exploration of these dilemmas and the ethical considerations they raise. Drawing on extensive interviews, the author identifies common ethical problems that practitioners encounter. What happens, for example, when personal interests intrude into therapy? How can the therapist make an accurate assessment of his or her appropriateness as a (...) care provider for a particular patient? What about confidentiality? How are problematic financial arrangements best addressed? The author goes on to show how these dilemmas may be intensified by the unique assumptions of different therapeutic orientations--individual, group, family, marital, and organizational--and how professionals can learn from such experiences to better understand and apply their particular approach. This analysis--and the words of the therapists themselves--provide both a guide to practice and a unique store of experience for the growing number of researchers and students concerned with ethical problems in psychotherapy. (shrink)

Biosynthesis means "integration of life". It is a holistic form of body psychotherapy, which was founded over forty-five years ago. The concept of life-streams is one of its major foundations, which has since been supported by research in neurobiology. How can we integrate the three most important domains of being human: our bodily existence, our psychological experience and our spiritual essence? Biosynthesis Therapy has developed a broad spectrum of reliable methods to make this possible and to free our life (...) energy. It is resource-oriented and is practised worldwide. David Boadella brings his many years of experience to provide in this book a trend-setting model for the understanding both of the origin of illness and of therapy. First published in 1987, this book has appeared in ten languages. It provides numerous case examples and is fascinating and enriching for the normal reader as well as for therapists from many different schools. In this book, the word "bioenergetic" is used to refer to the study of life energy, which is a major foundation of the therapy method "Biosynthesis". This is not to be confused with the term "Bioenergetic Analysis", an other and different form of body psychotherapy. Since 1985, together with David Boadella, Biosynthesis has been developed further by Dr. Silvia Specht Boadella, particularly in its philosophical and transpersonal aspects. In 1990, Biosynthesis was the first form of body psychotherapy to be scientifically accredited by the European Association of Psychotherapy. Biosynthesis therapists can therefore receive the European Certificate of Psychotherapy ECP. In 2001, the International Foundation of Biosynthesis IFB was formed, to coordinate trainings and research in twenty countries in Europe, Asia, North and South America. The newest information about Biosynthesis, including our actual course programme, you will find on our website. David Boadella International Institute for Biosynthesis IIBS, Benzenrüti 6, CH-9410 Heiden, Switzerland E-mail: [email protected]_ _www.biosynthesis.org_ _The Author_ David Boadella, born 1931 in London, pioneer of body psychotherapy and founder of Biosynthesis. He studied education, psychology and literature and wrote numerous articles and several books. Since 1985, he is the Director of the International Institute for Biosynthesis in Switzerland. In 1989, he was elected as the first President of the European Association for Body Psychotherapy EABP. In 1995, he was awarded an honorary doctorate from the "Open International University of Complementary Medicine". Author of "Wilhelm Reich: The evolution of his work". _Disclaimer_ Basically this book contains neither exercises or advices. Nevertheless, if statements from the book should be used for self-treatment or for treatment of others, every form of liability of the author or the publisher for personal, material, or financial damage is excluded. (shrink)

Medicine in the twenty-first century is increasingly reliant on research to guarantee the safety and efficacy of medical interventions. As a result, the need to understand the ethical issues that research generates is becoming essential. This volume introduces the principal areas of concern in research on human subjects, offering a framework for understanding research ethics, and the relationship between ethics and compliance. Research Ethics brings together leading scholars in bioethics and the topics covered include the unique concerns that arise in (...) specific areas of research such as gene therapy and stem cell research. Individual chapters also address the ethical issues that occur when conducting research with specific populations such as infants or adolescents, and the volume looks at important emerging questions in human subjects research, namely financial conflicts of interest and the interpretation of scientific data. (shrink)

Medicine in the twenty-first century is increasingly reliant on research to guarantee the safety and efficacy of medical interventions. As a result, the need to understand the ethical issues that research generates is becoming essential. This volume introduces the principal areas of concern in research on human subjects, offering a framework for understanding research ethics, and the relationship between ethics and compliance. Research Ethics brings together leading scholars in bioethics and the topics covered include the unique concerns that arise in (...) specific areas of research such as gene therapy and stem cell research. Individual chapters also address the ethical issues that arise when conducting research with specific populations such as infants or adolescents, and the volume looks at important emerging issues in human subjects research, namely financial conflicts of interest and the interpretation of scientific data. (shrink)

Ethical challenges in genomic epidemiology are the direct result of novel tools used to confront scientific challenges in the field. An orders-of-magnitude increase in scale of genetic data collection has created the need for establishing diffuse international partnerships, sometimes across developed- and developing-world countries, with ramifications for assigning research ownership, distributing intellectual property rights, and encouraging capacity-building. Meanwhile, the fact that genomic epidemiological research is so far upstream in the pipeline of therapy development has implications for the privacy rights (...) of research participants and for a rigorous definition of valid informed consent, particularly in resource-poor settings. From these scientific underpinnings, we distill out two main categories of ethical issues: (1) How should researchers ensure that the subjects of research are appropriately protected? and (2) What is the structure of an equitable and fair system for distributing the financial and scientific rewards of research? We attempt to delineate the contours of specific problems in each category and propose steps toward solutions with reference to a particular project, known as gMap.net, that focuses on genomic epidemiological studies of malaria. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Feminist Studies 41, no. 3. © 2015 by Feminist Studies, Inc. 623 Jaye Cee Whitehead, Kath Bassett, Leia Franchini, and Michael Iacolucci “The Proof Is in the Pudding”: How Mental Health Practitioners View the Power of “Sex Hormones” in the Process of Transition In the United States today, popular discourse touts the power of “sex hormones” and hormone receptors in the brain to chemically produce gender expressions (manifested in (...) physical sex traits, behaviors, and attitudes) and identities (a sense of self as feminine or masculine). These accounts range from common assumptions that Western ideals of femininity (such as empathy understanding, cooperative orientation, nurturing behavior) and masculinity (rational/spatial understanding, competitive orientation, violent behavior) are produced by corresponding sex hormones, to studies that reduce complex gender identities and macrosocial economic phenomena to presocial, binary, hormonal processes.1 For sociologists, accounts that reduce complex identities to internal hormonal reactions are problematic for two primary reasons: first, they are inaccurate because they fail to examine how hormonal reactions are embedded in a complex cultural process of meaning and interpretation; second, they operate as bioreductive ideologies that obscure the social power inherent to the process of gender identity construction. In what follows, we extend both of these insights by examining mental health 1. For an example of a hybrid popular-scientific account of the power of sex hormones to destabilize economic structures, see Jon Coates and Joe Herbert, “Endogenous Steroids and Financial Risk Taking on a London Trading Floor,” Proceedings of the National Academy of Sciences 105, no. 16 (April 2008): 6167–72. 624 Whitehead, Bassett, Franchini, and Iacolucci practitioners’ divergent interpretations of the power of sex hormones in the process of gender transition.2 In doing so, we examine the cultural power of sex hormones in crafting gender identities without reproducing reductionist interpretations of trans embodiment. Perhaps what is most perplexing about the way we speak of sex hormones is that we know it is inaccurate to describe these hormones as sexed; scientists have acknowledged since the 1930s that they are neither sex specific in their function, nor in terms of their location in male or female bodies.3 In her extensive historicization of sex hormones, Anne Fausto-Sterling concludes that it is more accurate to call androgen- and estrogen-based hormones, “steroid hormones” as they have functions that are not confined to corresponding sexed bodies. In fact she urges scientists to “break out of the sex hormone straightjacket” and to look at steroids as just one of a number of components that are important to the creation of sex and gender, including environment and experience.4 Scholars also point to an inextricable link between the chemical operation of hormones and the social process of constructing meaning, both at the level of social interaction and macrocultural constructions of sex categories and gender ideologies.5 While brain organization/activation theory attributes sex and gender differences to hormonal interactions within the developing brain, Fausto-Sterling questions the distinction between activation and organization by pointing out how “the brain can respond to hormonal stimuli with anatomical changes…hormonal systems, after all, respond exquisitely to experience, be it in the form of nutrition, stress, or sexual activity (to name but a few possibilities ).”6 Drawing from Elizabeth Grosz, Fausto-Sterling argues that the power of hormones is best understood according to the model of the 2. “Gender transition” is a controversial phrase, as it implies that transgendered individuals who receive hormone therapy are changing identities. We are only using it for lack of clear alternative phrasing, not because we believe body modifications change gender identities. 3. See Anne Fausto-Sterling, Sexing the Body: Gender Politics and the Construction of Sexuality (New York: Basic Books, 2000); Rebecca Jordan-Young, Brainstorm: The Flaws in the Science of Sex Differences (Cambridge, MA: Harvard University Press, 2010); and Nelly Oudshoorn, Beyond the Natural Body: An Archeology of Sex Hormones (New York: Routledge, 1994). 4. Fausto-Sterling, Sexing the Body, 193–94. 5. Fausto-Sterling, Sexing the Body. 6. Ibid., 232. Whitehead, Bassett, Franchini, and Iacolucci 625 Möbius strip, wherein internal components of the self are always connected to and continuous with outer components such as culture and environment.7 In other... (shrink)

Aim To explore the way people living with HIV and healthcare providers in Togo judge the priority of HIV-infected patients regarding the allocation of antiretroviral drugs. Method From June to September 2015, 200 adults living with HIV and 121 healthcare providers living in Togo were recruited for the study. They were presented with stories of a few lines depicting the situation of an HIV-infected patient and were instructed to judge the extent to which the patient should be given priority for (...) antiretroviral drugs. The stories were composed by systematically varying the levels of four factors: the severity of HIV infection, the financial situation of the patient, the patient's family responsibilities and the time elapsed since the first consultation. Results Five clusters were identified: 65% of the participants expressed the view that patients who are poor and severely sick should be treated as a priority, 13% prioritised treatment of patients who are poor and parents of small children, 12% expressed the view that the poor should be treated as a priority, 4% preferred that the sickest be treated as a priority and 6% wanted all patients to get treatment. Conclusions WHO's guideline regarding antiretroviral therapy allocation currently in use in many African countries does not reflect the preferences of Togolese people living with HIV. For most HIV-infected patients in Togo, patients who cannot get treatment on their own should be treated as a priority. (shrink)

The idea of paying donors in order to make more human bodily material available for therapy, assisted reproduction, and biomedical research is notoriously controversial. However, while national and international donation policies largely oppose financial incentives they do not treat all parts of the body equally: incentives are allowed in connection to the provision of some parts but not others. Taking off from this observation, I discuss whether body parts differ as regards the ethical legitimacy of incentives and, if (...) so, why. I distinguish two approaches to this issue. On a ”principled” approach, some but not all body parts are inherently special in a way that proscribes payment. On a ”pragmatic” approach, the appropriateness of payment in relation to a specific part must be determined through an overall assessment of e.g. the implications of payment for the health and welfare of providers, recipients, and third parties, and the quality of providers’ consent. I argue that the first approach raises deep and potentially divisive questions about the good life, whereas the second approach invokes currently unsupported empirical assumptions and requires difficult balancing between different values and the interests of different people. This does not mean that any attempt to distinguish between body parts in regard to the appropriateness of payment necessarily fails. However, I conclude, any plausible such attempt should either articulate and defend a specific view of the good life, or gather relevant empirical evidence and apply defensible principles for weighing goods and interests. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Medical Tourism:Crossing Borders to Access Health CareHarriet Hutson Gray (bio) and Susan Cartier Poland (bio)Traveling abroad for one's health has a long history for the upper social classes who sought spas, mineral baths, innovative therapies, and the fair climate of the Mediterranean as destinations to improve their health. The newest trend in the first decade of the twenty-first century has the middle class traveling from developed countries to those (...) with emerging economies to avoid treatment delays, prohibitive costs for life-saving procedures, or simply high costs for elective surgery. Others leave to have access to assisted suicide in countries that have legalized it: Belgium, The Netherlands, and Switzerland. This new era of globalization in health care has arrived without the benefit of international standards, government oversight, or ethical and legal review.Howard Staab, a self-employed carpenter from North Carolina, flew to India for his medically necessary heart surgery, scheduled a side trip to the Taj Mahal, and returned home to work in North Carolina. He spent a total of less than $10,000, instead of the $200,000 required from the local hospital (I, Milstein and Smith 2006).At first blush, the outsourcing of medical care to India seems to be a particular solution for a particular problem. However, the particularity of Mr. Staab is not unique. His experience is emblematic of those patients in the United States with a medical need for major and elective procedures, but who also must bear the total cost of these procedures. These middle-class, under-insured Americans go abroad.In tandem with increasingly aggressive marketing campaigns, American hospitals and companies have begun to leverage their connections in Asia to grow the medical tourism business into a major economic force. What are the consequences of this?Several authors point to the effect on the host country's population, particularly the poor, to be pushed farther down the queue to receive adequate, affordable care. Resources are applied to the foreign trade instead of building the local [End Page 193] medical infrastructure. Another potential problem is the obligation of the home-country physician to provide follow-up care. What are the legal ramifications when the procedure was illegal to begin with? Are there opportunities for redress for medical errors?These factors may be converging into a "perfect storm" for health care in the U.S., in which the potential participation of the major insurance companies in promoting offshore care will be the tipping point in the precarious structure that represents the economic currents in health care. Third-party administrators and self-funded employers may be on the cutting edge in 2009 by providing incentives to employees to travel overseas for care.I. Economic ConsiderationsConnell, John. Medical Tourism: Sea, Sun, Sand and... Surgery. Tourism Management 27: 1093–1100, 2006.As evidence of the interest of traditional tour operators in this newer twist on the industry, the author explores medical tourism as an element of the growth of world tourism. In promoting medical tourism, he urges consideration of such issues as the privatization of health care, the foundational role of technology, and uneven access to health resources.Dunn, Philip. Medical Tourism Takes Flight. H and HN: Hospitals and Health Networks: 40–44, November 2007.Writing for U.S. health care executives, Dunn emphasizes that the reality of medical tourism competes with the local medical center for patients and their insurance dollars in a significant way. He examines the possibility that U.S. insurance plans soon may offer to pay for what is currently a cash only business and that the economic impact to the local medical center could be significant or even devastating.Frontiers of Health Services Management [Selected Articles] 24 (2), Winter 2007.In "Managing Healthcare Services in the Global Marketplace" (pp. 3–18), Bruce J. Fried and Dean M. Harris consider legal, ethical, and financial implications of the international workforce. In "Globalization of Health Care" (pp. 19–30), Lynn Schroth and Ruthy Khawahja point out that the transfer of comprehensive management expertise and intellectual property from U.S. medical centers to international sites is driving the success of collaboration between U.S. and foreign health care centers. In "Is... (shrink)

In this paper, the public view of nanotechnology and its applications in medicine, agriculture and industry is evaluated in the mega cities of Iran. Data from 683 individuals in public places provided the first civic perception of nanotechnology in Iran. Quantitative statistical analysis on positive or negative points of view demonstrated that Iranian people had general positive opinions on nanotechnology and its application in medicine. They believed that nanomedicine can significantly improve the current methods used in disease treatments, especially for (...) cancer therapy. In general, the responders believed that they would easily accept the use of nanotechnology products and would like increased financial support of the government on nanomedicine and nanotechnology research fields and they showed little anxiety about the possible risks. According to our statistical analysis, three individual characteristics age, education level and career had a direct correlation with the knowledge level of Iranian people on nanotechnology in the mega cities of Iran. (shrink)

Three-way baby making is not new: genetic surrogacy existed in Biblical times and donor insemination was recorded in Britain over 200 years ago. However, the gift of gametes between women breaks all social conventions. This paper examines the phenomenon of gamete-donation questioning whether a ‘gift’ of such magnitude can ever be ‘free’ (as the Human Fertilisation & Embryology Authority advocates), or a ‘true’ gift (in Derridian terms). Exploration of this unprecedented ‘gift’ from a psychoanalytic approach is supplemented by an interdisciplinary (...) one, drawing on the gift literature in philosophy, anthropology, ethnography and socioeconomics, as well as neonatal research and reproductive medicine. Critics note the dearth of analyses that take seriously the psychological ramifications of contemporary treatments, protocols and expectations in reproductive medicine. Based on psychoanalytic therapy within a clinical practice devoted to reproductive issues, the author argues that institutionalised asexual reproduction alters unconscious conceptualisations of the act of procreation – converting the passionate intimacy of primal scene into a clinical coupling of gametes in a mechanised arena. The author argues that, too charged to contemplate, the gamete's transcendent quality and blurring of elementary personae/res distinctions leads protagonists, including professionals, to defensive commodification. Multiple emotional meanings are ascribed to gifted gametes by each in the triangle of donor, recipient and offspring, illustrated here with verbatim material. This article addresses some of the far-reaching socio-political consequences for class, race, age, gender and sexuality of asexual reproduction, related to selection procedures and uneven global and local distribution of fertility treatment and its cost in financial, physical, practical and emotional terms. Similarly, feminist unease over (patriarchal) reproductive control and gatekeeping policies are considered, as well as ethical concerns over genetic manipulation, pre-implantation screening, sex selection, selective foetocide and potential exploitation of transnational donors and surrogates. (shrink)

Electroencephalography (EEG) neurofeedback is a type of biofeedback that purportedly teaches users how to control their brainwaves. Although neurofeedback is currently offered by thousands of providers worldwide, its provision is contested, as its effectiveness beyond a placebo effect is unproven. While scholars have voiced numerous ethical concerns about neurofeedback—regarding opportunity cost, physical and psychological harms, financial cost, and informed consent—to date these concerns have remained theoretical. This pilot study aimed to provide insights on whether these issues were supported by (...) empirical data from the experiences of neurofeedback users. Semi-structured telephone interviews were conducted with individuals who had used EEG neurofeedback for themselves and/or for a child. The majority of respondents (N = 36) were female (75%), white (92%), and of higher socioeconomic status relative to the U.S. population. Among adult users (n = 33), most (78.8%) resorted to neurofeedback after having tried other therapies, and were satisfied with the treatment (81.8%). The majority paid for neurofeedback out-of-pocket (72.7%) and considered it to be good value for money (84.8%). More than half (57.6%) considered neurofeedback to be a scientifically well-established therapy. However, of those, 78.9% were using neurofeedback for indications not adequately supported by scientific evidence. Concerns regarding opportunity cost, physical and psychological harms, and financial cost are not substantiated by our findings. Our results partially support concerns regarding insufficient understanding of limitations. This study underlines the disconnect between some of the theoretical concerns raised by scholars regarding the use of non-validated therapies and the lived experiences of users. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Road to Understanding and Acceptance of the Late Effects of Pediatric Brain Tumors and TreatmentJeanne CarlsonWe had little warning or time to adjust to our daughter’s diagnosis. A call from her third grade teacher reporting that Sarah seemed to be having vision problems rapidly led to eye exams, an MRI, and the discovery of a Germinoma brain tumor in the suprastellar region of Sarah’s brain. We were terrified (...) but began treatment feeling optimistic about the outlook for Sarah’s recovery. Luckily, Sarah’s treatment was relatively non–invasive and quick, chemotherapy and radiation, five months start to finish. We were thrilled to have Sarah’s treatment behind us.As any parent of a child with a life–threatening illness knows, family life is seriously disrupted by the countless doctor, lab, and hospital visits, the worry, and the financial strain that are suddenly added to the demands of everyday life. We did our best to balance our focus on both of our children as Sarah is a twin and we didn’t want her brother Will to suffer as a result of his sister’s illness. It wasn’t easy but we found a way to schedule Will’s usual play dates, baseball practice, and family time. We were all happy and relieved when Sarah’s treatment was completed, yet we would later learn that we had been incredibly naïve in two ways; we thought that our brain tumor journey was over after Sarah’s treatment was completed and we thought that we’d brought Will through the process without effect. We had a lot to learn.At the time of diagnosis we knew that Sarah’s memory and ability to express emotion had already been impacted by the tumor but we didn’t yet know what that would mean to her quality of life. We were virtually unaware however that at age nine the chemotherapy and radiation treatments that Sarah received would result in profound late effects. Following treatment Sarah successfully completed 3rd grade and even received excellent STAR test scores (California state standardized tests). In 4th grade however, Sarah’s performance began to diverge from that of her peers and she found herself struggling in school and unable to make friends. We began looking for ways to help our daughter.What followed was a five year long journey through testing, evaluations, individualized education plans (IEPs), and therapies, which, in the end, left our family needing to accept the fact that although Sarah remains intelligent and artistically talented, she suffers from a constellation of late effects that will always affect her ability to function in the world. As a result of Sarah’s tumor and treatment she struggles with Auditory Processing Disorder, word finding problems, poor executive function, inability to recognize how she feels, significant difficulty making decisions, inability to read social cues, poor memory, slow processing, an emotional age of about nine, and lots of anxiety. She is also panhypopituitary, meaning that she has no remaining pituitary function and must take replacement medications by pill and injection, has hypothalamic obesity (HO), which is primarily controlled by more medication, and Raynaud’s Disease. The HO is an ongoing challenge because if Sarah does gain weight she can’t lose it again and exercise is not an easy solution because, like many pediatric brain tumor survivors, Sarah is easily fatigued. Finally, although Sarah’s vision improved after treatment her vision loss is significant enough to prevent her from driving. We pieced together this understanding of Sarah’s challenges and disabilities slowly so it wasn’t until the end of our children’s middle school years that we finally accepted the magnitude of the damage caused by the tumor and treatment. Thereafter we changed our focus from what Sarah might achieve in life to how to support [End Page 21] her in the activities at which she still excels and how to keep her active, interested in life, and feeling good about herself.It would have been a huge gift if we had been provided with information about the possible late effects that can result from treating the brain of a 9–year–old... (shrink)

BackgroundPrivate umbilical cord blood banking is a for-profit industry in which parents pay to store blood for potential future use. Governments have noted the tendency for private banks to oversell the potential for cord blood use, especially in relation to speculative cell therapies not yet supported by clinical evidence. We assessed the regulatory landscape governing private cord bank marketing in Canada.Main bodyBecause the problematic marketing of private cord blood banking for future use often relates to speculative future cell therapies that (...) do not exist and are not being advertised for current clinical use, most private blood bank marketing seems to fall outside Health Canada’s regulatory scope. However, this problematic marketing is regulated by the Competition Bureau pursuant to the Competition Act. While representations relating to future hypothetical treatments may not always be subject to the legal requirement for claim substantiation, the law also prohibits individuals and companies from knowingly or recklessly making representations that are “false or misleading in a material respect.” A representation is materially false or misleading when it could “influence a consumer’s behavior or purchasing decisions,” and consumers are likely to be considered to be “credulous and inexperienced” for the purposes of assessing an advertisement’s general impression. Because all of the potential benefit of the banking is derived from the potential future use of the biological material for health interventions directed toward the customers and their relatives, and because we know the best available medical evidence indicates a very low probability of utility in this context, we can say with confidence that some private cord blood banking claims are materially misleading. Moreover, to the extent that medical professionals are involved in private bank interactions with customers or hold ownership stakes in private banks, they are subject to professional codes, standards of practice, and potentially fiduciary obligations that further prohibit misleading marketing.ConclusionsPrivate cord blood bank marketing that advertises hypothetical future treatments can be misleading and may influence consumer behaviour. This marketing may breach existing advertising law. Regulatory bodies should enforce the law in order to help prevent public health and personal financial harm. (shrink)

The current debates about seat belts in motor cars and the evils of smoking may only be straws in the wind if the scenario sketched in this paper were translated into a social, political programme. Then 'illness would increasingly be seen as a failure to keep healthy and thus culpable. The failures [the patients] ... must either be irresponsible and hence punishable at least by the imposition of financial penalties or insane and thus in need of corrective therapy.' (...) If this sounds like 1984 the reader must read the whole argument set out in this paper and make his own judgment. He may not be encouraged by what he reads but he will be forewarned. There is no answer to the question, What shall I do, if this prophecy is true? (shrink)

Behaviorally assessing residual consciousness of acutely comatose patients involves a high rate of false-negatives. That is, long-term behavioral assessment shows that 41% of vegetative state patients in fact have residual consciousness. Nonetheless, surrogates need to remove ventilation before the acute-phase passes away if they want to induce medico-legal death due to pragmatic factors, such as financial costs. So, surrogate decision-making regarding behaviorally nonresponsive acutely comatose patients involves a moral dilemma: should we ignore the chance that patients have residual consciousness (...) for the sake of pragmatic factors? This paper examines whether neural methods can resolve the moral dilemma. Neural methods are used to assess residual consciousness of behaviorally nonresponsive postcomatose patients. For instance, by instructing a vegetative state patient to imagine wiggling all of her toes, conscious- ness is ascribed if brain activities are localized in the supplementary motor area. Since the most extensive application of neural methods has been in chronic population, it is unclear whether such methods can resolve the moral dilemma. I argue that neural methods also involve a high rate of false-negatives because current tasks of neural methods are structurally misguided. Given the argument, there is no significant difference between behavioral and neural methods regarding the moral dilemma. (shrink)

The Pfizer-BioNTech coronavirus vaccine is 90 percent effective in protecting against COVID-19. It would not have been possible without the tireless effort of Professor Katalin Karikó, a scientific innovator fitting the mold of dynamic inventor Arthur Diamond presents in his book, Openness to Creative Destruction Sustaining Innovative Dynamism. Not only did Professor Karikó persist in her beliefs in the therapeutic potential of synthetic messenger RNA over the course of four decades, but she did so despite the criticisms of other scientists (...) and despite lack of financial backing for large parts of her career. Professor Karikó is a good example of the unconventional picture that Diamond paints of entrepreneurs in a specific version of market capitalism he terms, innovative dynamism. Specifically, she is an example of someone who does not hold prevailing academic theories in too high a regard and instead privileges her tacit knowledge (knowledge gained from years of working with mRNA in the lab) to persist believing in the potential of a therapy that now could quite literally save the world. Most surprisingly, she, like most of the entrepreneurs surveyed in the book, seem not primarily motivated by profit, though the money their projects eventually attract is integral to disseminating their creative ideas to the masses. -/- Are the many examples offered by Diamond that are similar to Professor Karikó’s story evidence against the long-standing suspicion that there is something morally damning in the self-interested motivations of innovative entrepreneurship? Is it the case that others would have inevitably pursued the cure that Karikó pursued, regardless of economic system? In light of COVID-19 and other high-pressure situations, ought we to care how we constrain the innovators who develop solutions? Diamond’s case for the economic system, innovative dynamism, seeks to answer these and other important questions concerning our political and cultural treatment of innovators and entrepreneurs. This review critically assesses his efforts. I make my case by first reviewing the major argumentative structure of the book, then I summarize and evaluate the three major themes Diamond presents in the book: (1) what is innovative dynamism and who are its competitors, (2) what are the major benefits of innovative dynamism, (3) who is the innovative entrepreneur and how do we support him or her? (shrink)

The way Cambodian patients and health professionals judge the priority of HIV-infected patients in relation to the allocation of antiretroviral drugs was examined. Participants were either HIV-infected patients attending the HIV/AIDS Care and Support Centre for People Living with HIV/AIDS in Phnom Penh (29 females and 21 males) or members of the staff (9 physicians, 6 pharmacists and 15 health counsellors and health educators). They were presented with stories of a few lines depicting a patient's situation and were instructed to (...) judge the extent to which the patient should be given priority for HIV drugs. The stories were composed according to a four within-subject factor design: (a) the patient's family responsibilities, (b) the severity of infection, (c) the time elapsed since the first consultation, and (d) the financial difficulties of the family. Most patients expressed the view that the drugs should be used for the patients who are most important from a familial point of view, namely, when the family contains small children and/or is already in a precarious financial condition. (shrink)