Precision medicine is an emerging approach to treatment and disease prevention that relies on linkages between very large datasets of health information that is shared amongst researchers and health professionals. While studies suggest broad support for sharing precision medicine data with researchers at publicly funded institutions, there is reluctance to share health information with private industry for research and development. As the private sector is likely to play an important role in generating public benefits from precision (...) medicine initiatives, it is important to understand what the concerns are and how they might be mitigated. This study reports outcomes of a deliberative method of citizen engagement in Singapore that asked whether sharing precision medicine data with private industry would be permissible, and if so, under what circumstances. Findings from this citizens’ jury suggest sharing with industry would be permissible under certain conditions that are set out in nine recommendations. Implications of the recommendations and their underlying assumptions for policy decision makers are discussed. This study aligns with prior international studies which found conditional acceptance for data sharing with private industry, a public benefit requirement, specific reluctance to share with insurance companies and an emphasis on accountability and transparency to demonstrate trustworthiness. However, our results differ from prior studies in that opt-in consent did not dominate the deliberations as jurors were able to set it aside as an assumed prerequisite for participation in a precision medicine programme. (shrink)

In this paper, we discuss how access to health-related data by private insurers, other than affecting the interests of prospective policy-holders, can also influence their propensity to make personal data available for research purposes. We take the case of national precision medicine initiatives as an illustrative example of this possible tendency. Precision medicine pools together unprecedented amounts of genetic as well as phenotypic data. The possibility that private insurers could claim access to such rapidly accumulating biomedical (...) Big Data or to health-related information derived from it would discourage people from enrolling in precision medicine studies. Should that be the case, the economic value of personal data for the insurance industry would end up affecting the public value of data as a scientific resource. In what follows we articulate three principles – trustworthiness, openness and evidence – to address this problem and tame its potentially harmful effects on the development of precision medicine and, more generally, on the advancement of medical science. (shrink)

This article explores a unique opportunity for shaping public health law and policy to reflect a greater balance between public and private goods in two areas of primary concern to human well-being: medicine and human biosecurity. This opportunity is presented both by the rapid changes likely to occur in these areas as a result of nanotechnology and the fact that multinational corporate actors have not yet had the opportunity to use their well-honed techniques of governance influence to modify (...) public health policy and law in this area to their own narrowly focused advantage. Such a rare opportunity to rethink some fundamental assumptions about a regulatory framework for globally important health issues in advance is one reason why issues concerning nanotechnology regulation in medicine and human biosecurity should have considerable interest to health law and policy scholars. (shrink)

The opinion of the American Medical Association (AMA) Council on Ethical and Judicial Affairs (CEJA) on the accommodation of conscientious objectors among medical doctors aims to balance fairly patients’ rights of access to care and accommodating doctors’ deeply held personal beliefs. Like similar documents, it fails. Patients will not find it persuasive, and neither should they. The lines drawn aim at a reasonable compromise between positions that are not amenable to compromise. They are also largely arbitrary. This article explains why (...) that is the case. The view that conscientious objection accommodation has no place in modern medicine is defended. (shrink)

Book reviewed in this article: Abortion and the Private Practice of Medicine. By Jonathan B. Imber.

This paper considers how best to approach dilemmas posed to global health and biosecurity policy by increasing advances in practical applications of nanotechnology. The type of nano-technology policy dilemmas discussed include: expenditure of public funds, public-funded research priorities, public confidence in government and science and, finally, public safety. The article examines the value in this context of a legal obligation that the development of relevant public health law be calibrated against less corporate-infuenced norms issuing from bioethics and international human rights.

In June 2020, Gilead agreed to provide the USA with 500 000 doses of remdesivir—an antiviral drug which at that time was percieved to show promise in reducing the recovery time for patients with COVID-19. This quantity represented Gilead’s then full production capacity for July and 90% of its capacity for August and September. Similar deals are evident around access to proposed vaccines for COVID-19, and such deals are only likely to increase. These attempts to secure preferential access to medicines (...) and vaccines, so-called vaccine/treatment nationalism, jeopardise supplies of life-saving treatments and vaccines available elsewhere, and jeopardise global equitable distribution of such vaccines/treatments more generally. Much of the focus to date has been on States’ role in negotiating such deals. However, such developments also demonstrate the power patent holders have in controlling access to life-saving healthcare, determining who obtains access first and at what price. This article argues that the extent of control currently given to patent holders for COVID-19 must be questioned. This article demonstrates that patents have significant implications for healthcare acting as private governance tools over patented inventions. It is only by greater probing of patent holders’ role in delivering access to medicines, diagnostics and vaccines for COVID-19 that equitable global equitable access can be achieved. (shrink)

Precision medicine and digital phenotyping are two prominent data-based approaches within digital medicine. While precision medicine historically used primarily genetic data to find targeted treatment options, digital phenotyping relies on the usage of big data deriving from digital devices such as smartphones, wearables and other connected devices. This paper first focusses on the aspect of data type to explore differences and similarities between precision medicine and digital phenotyping. It outlines different ways of data collection and production (...) and the consequences thereof. Second, it shows how these sorts of data influence dominant beliefs in the field: The field of precision medicine relying on the dominant understanding of ‘genetic determinism’ imported from genetics, digital phenotyping building on the logic of ‘data fundamentalism’. In the end, the analysis shows how digital data informs potentials as well as challenges of precision medicine and digital phenotyping: a better health care for individuals connected with individualisation and responsibilisation for all, with a prognosed shift from reactive to preventive medicine. Additionally, data-based approaches might facilitate epistemological and ontological redirections for the whole field of medicine that will also affect knowledge production and a reassessment of the value of different types of knowledge with all its consequences. Institutionally, it might lead to shifts in distribution of power to experts in big data related technologies, i.e. private companies. (shrink)

In an effort to create a mechanism for addressing a critical need of providing medicines for economically developing countries, the Chiron Corporation and the Global Alliance for TB Drug Development have entered into an innovative public-private partnership. In the following interview, Craig Wheeler discusses the origins and nature of this agreement that could set a pattern for how corporations and nonprofit organizations can work together in drug development.

Rather than seek to distinguish hype from legitimate promise, it may be more helpful to think about personalised medicine as embodying a promissory economy which serves both to mobilize resources for research and — partly at least — to determine the ends to which that research is directed. Personalised medicine is a development of the larger promissory economy of medical biotechnology. As such, it systematically conflates public benefit with the pursuit of commercial and especially pharmaceutical interests. Consequently, research (...) and development in personalised medicine tends to favour the production of expensive new treatments over unprofitable forms of prevention or more effective use of older therapies. A rebalancing of research priorities is needed to favour the pursuit of public benefit, even when it does not deliver private profits. This will in turn require sustained reflection, self-criticism and often self-denial on the part of public research funders and the scientists they support. (shrink)

The main purpose of this article is to explore, from an ethical perspective, one particular branch of what is today called “spiritual medicine”: namely, prayer therapy. Several landmark studies in the literature will be thoroughly examined, respectively the classical study of Byrd (1988), the replica of Harris et al. (1999), and the controversial study of Leibovici (2001). Beginning with these studies and the related controversies surrounding them, the religious features and ethical consequences of prayer therapy are investigated. The ethical (...) aspects of prayer therapy – the informed consent issue, the issue of respecting bioethical principles, and the issue of medical competence in offering such techniques – are thoroughly addressed. Finally, an alternative way of framing the prayer therapy discussion is offered, in the context of public-private dichotomy. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Private Bioethics Forums:Counterpoint to Government BodiesCynthia B. Cohen (bio) and Elizabeth Leibold McCloskey (bio)Ethical issues associated with reproductive technologies quickly gain public attention. The front pages of newspapers have featured stories about grandmothers giving birth to their own grandchildren, couples "renting" wombs from surrogates, and researchers prepared to transplant fetal ovaries into women unable to produce viable eggs. With each new and bolder foray into reproductive realms, the (...) question of whether to set limits on the use of such technologies surfaces. An ancillary debate inevitably ensues about the proper forum for discussing and deciding such limits. The recent announcement of human embryo splitting or cloning research is no exception to this pattern. Articles in both the popular press and academic circles in the wake of the reported research contain lamentations about the absence of a national ethics body that could address the ethical issues raised by the cloning experiment. This research also breathed new life into congressional calls to create a government bioethics commission.1At times, it appears that the substantive questions raised by a procedure like cloning are subsumed under the debate about whether this ethics group or that should be convened to study the matter. But the forum in which options are discussed is as crucial to the development of sound ethical thought and public policy as are the conclusions themselves. Thus, we address the question of whether a private, as opposed to a public, bioethics body provides a distinctively useful forum for reaching an understanding of issues such as cloning that have significant ethical and public policy implications.A 1993 Office of Technology Assessment report, in which the authors suggest that a new federal bioethics commission might be useful, has helped to frame recent discussions about the value of government-sponsored bioethics bodies (Office of Technology Assessment 1993). To most people, the question of whether a national forum for bioethics is needed is synonymous with the question of whether a new federal body should be convened. Yet the existence of the National Advisory Board on Ethics in Reproduction (NABER) suggests that the scope of the question should be broadened. [End Page 283]NABER was born in 1992, in part as a response to an Institute of Medicine report on infertility. That document endorsed the formation of a nongovernment body to develop guidelines for assisted reproductive measures and fetal research in the event that a government body was not forthcoming (Institute of Medicine 1989). NABER, which was founded by the American College of Obstetricians and Gynecologists and the American Fertility Society, now functions wholly independently of those groups and is supported by private foundations including the Ford, Greenwall, and Josiah Macy, Jr., Foundations and the Walter and Elise Haas Fund. NABER has issued a report on ethical issues related to the use of fetal tissue (Cohen and Jonsen 1993), is about to publish a report and background papers on oocyte donation, and presents a report on human cloning in this issue of the Kennedy Institute of Ethics Journal. In addition, it has developed a protocol for NABER review of research proposals from federal agencies subject to federal guidelines on the use of human subjects in research.Thus, in function and form, NABER was envisioned as a substitute for a government body, and it now functions in a manner similar to several types of government bioethics groups. Like the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (National Commission) and the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (President's Commission), NABER functions primarily through the publication of reports intended for a broad audience of practitioners, patients, policymakers, and the general public. Just as the Ethics Advisory Board of the late 1970s examined ethical issues related to specific protocols or types of research as they arose, NABER's purposes include scrutinizing the ethics of various research efforts in the reproductive area.NABER also parallels past government bodies in form. Like these groups, NABER is a multidisciplinary board that meets regularly and is supplemented by consultants and staff who provide research and writing for the board. Its members are nationally recognized in... (shrink)

Along with concerns about the deleterious effects of politically driven government intervention on science are the intrusion of private sector interests into the conduct of research and the reporting of its results. Scientists are generally unprepared for the challenges posed by private interests seeking to advance their economic, political, or ideological agendas. They must educate and prepare themselves for assaults on scientific freedom, not because it is a legal right, but rather because social progress depends on it.

This article reads Malu De Martino’s 2010 film Como Esqueçer as a case study in self-harm as a mode of expression and self-inquiry. Drawing on disability and queer theory, psychoanalysis, and sociology of medicine, the author argues that How to Forget charts a “crip” epistemology of self-harm and theorizes a “social self.” That is to say, the film models an orientation towards self-harm that offers a coalitional and social therapeutic understanding. Based on this reading, the author suggests the application (...) of practices of knowing-with, or knowing-in-relation as “cripistemology” to a broader therapeutic, research, and lay context. (shrink)

Toronto physician Brian Goldman had thought about “joining the camp that favours private health care for Canada.” Writing in the Canadian Medical Association Journal, he tells us that he changed his mind after one of his cats experienced a series of illnesses and misadventures that resulted in a Can$3,101 medical bill. “I’m just glad,” he says, “that the cost of health care never entered my deliberations.”’Canadian citizens and permanent residents are similarly free from most worries about the direct costs (...) of their own medical care, and have been for more than a generation. This reflects a fundamental difference between the Canadian and United States contexts for health policy. Since the failure of President Clinton's first-term efforts to provide something approximating universal health insurance, reforms to the existing regime of providing and financing health care in the United States have been incremental, and primarily responsive to the changing nature of the health care marketplace. In Canada, universal publicly funded first-dollar coverage for most physicians’ and hospitals’ services has been a reality since the early 1970s. (shrink)

Toronto physician Brian Goldman had thought about “joining the camp that favours private health care for Canada.” Writing in the Canadian Medical Association Journal, he tells us that he changed his mind after one of his cats experienced a series of illnesses and misadventures that resulted in a Can$3,101 medical bill. “I’m just glad,” he says, “that the cost of health care never entered my deliberations.”’Canadian citizens and permanent residents are similarly free from most worries about the direct costs (...) of their own medical care, and have been for more than a generation. This reflects a fundamental difference between the Canadian and United States contexts for health policy. Since the failure of President Clinton's first-term efforts to provide something approximating universal health insurance, reforms to the existing regime of providing and financing health care in the United States have been incremental, and primarily responsive to the changing nature of the health care marketplace. In Canada, universal publicly funded first-dollar coverage for most physicians’ and hospitals’ services has been a reality since the early 1970s. (shrink)

Creating a single national health insurance pool is not likely to destabilize the economy by supplanting the private health insurance industry. This industry insures a relatively small percentage of the population and holds very little of the risk such insurance implies. In effect, insurance companies function as middlemen, bundling risk packages to distribute to other, larger companies and so serve a limited purpose. Were insurers to handle claims for a national pool as they do for the Medicare program, any (...) destabilization to the economy more broadly would be further minimized. (shrink)

Recently, dramatic price increases by several pharmaceutical companies have provoked public outrage. These scandals raise questions both about how pharmaceutical firms should be regulated and about how pharmaceutical executives ethically ought to make pricing decisions when drug prices are largely unregulated. Though there is an extensive literature on the regulatory question, the ethical question has been largely unexplored. This article defends a Kantian approach to the ethics of pharmaceutical pricing in an unregulated market. To the extent possible, pharmaceutical companies must (...) price drugs so that those who genuinely need them can get them without financial ruin. This requirement is an ethical side constraint, like the moral prohibitions on deception and theft, that takes precedence over a business’s interest in maximizing profit. That said, the requirement’s application is sensitive to the need to recoup the costs of research and to produce a return that financially justifies the original investment. It may not be either feasible or desirable for government to attempt to enforce the ethical requirements concerning just pharmaceutical pricing. Either price regulation or subsidy could fulfill government’s obligation to protect patients from being objectionably vulnerable to pricing decisions by private companies. (shrink)

We generally accept that medicine’s conceptual and ethical foundations are grounded in recognition of personhood. With patients in vegetative state, however, we’ve understood that the ethical implications of phenomenal consciousness are distinct from those of personhood. This suggests a need to reconsider medicine’s foundations. What is the role for recognition of consciousness (rather than personhood) in grounding the moral value of medicine and the specific demands of clinical ethics? I suggest that, according to holism, the moral value (...) of medicine is secured when conscious states are recognized in everyday medical science. Moreover, consciousness fully motivates traditional principles of clinical ethics if we understand respect for autonomy as respect for the dominion of an experiencer in the private, inescapable realm of bodily experience. When medicine’s foundations are grounded in recognition of consciousness, we understand how patients fully command respect even when they lack capacity to exercise their bodily dominion through decision-making. (shrink)

Precision medicine (PM) aims to revolutionise healthcare, but little is known about the role religion and spirituality might play in the ethical discourse about PM. This Perspective reports the outcomes of a knowledge exchange fora with religious authorities in Singapore about data sharing for PM. While the exchange did not identify any foundational religious objections to PM, ethical concerns were raised about the possibility for private industry to profiteer from social resources and the potential for genetic discrimination by (...) private health insurers. According to religious authorities in Singapore, sharing PM data with private industry will require a clear public benefit and robust data governance that incorporates principles of transparency, accountability and oversight. (shrink)

A thoughtful addition to the growing debate over public and private morality. Looks at lying and deception in law, family, medicine, government.

ABSTRACT Medicines that are vital for the saving and preserving of life in conditions of public health emergency or endemic serious disease are known as essential medicines. In many developing world settings such medicines may be unavailable, or unaffordably expensive for the majority of those in need of them. Furthermore, for many serious diseases (such as HIV/aids and tuberculosis) these essential medicines are protected by patents that permit the patent‐holder to operate a monopoly on their manufacture and supply, and to (...) price these medicines well above marginal cost. Recent international legal doctrine has placed great stress on the need to globalise intellectual property rights protections, and on the rights of intellectual property rights holders to have their property rights enforced. Although international intellectual property rights law does permit compulsory licensing of protected inventions in the interests of public health, the use of this right by sovereign states has proved highly controversial. In this paper I give an argument in support of states’ sovereign right to expropriate private intellectual property in conditions of public health emergency. This argument turns on a social contract argument for the legitimacy of states. The argument shows, further, that under some circumstances states are not merely permitted compulsory to license inventions, but are actually obliged to do so, on pain of failure of their legitimacy as sovereign states. The argument draws freely on a loose interpretation of Thomas Hobbes's arguments in his Leviathan, and on an analogy between his state of War and the situation of public health disasters. (shrink)

There has been a move in medicine towards patient-centred care, leading to more demands from patients for particular therapies and treatments, and for wish-fulfilling medicine: the use of medical services according to the patient's wishes to enhance their subjective functioning, appearance or health. In contrast to conventional medicine, this use of medical services is not needed from a medical point of view. Boundaries in wish-fulfilling medicine are partly set by a physician's decision to fulfil or decline (...) a patient's wish in practice. In order to develop a better understanding of how wish-fulfilling medicine occurs in practice in The Netherlands, a qualitative study (15 semistructured interviews and 1 focus group) was undertaken. The aim was to investigate the range and kind of arguments used by general practitioners and plastic surgeons in wish-fulfilling medicine. These groups represent the public funded realm of medicine as well as privately paid for services. Moreover, GPs and plastic surgeons can both be approached directly by patients in The Netherlands. The physicians studied raised many arguments that were expected: they used patient autonomy, risks and benefits, normality and justice to limit wish-fulfilling medicine. In addition, arguments new to this debate were uncovered, which were frequently used to justify compliance with a patient's request. Such arguments seem familiar from conventional medicine, including empathy, the patient–doctor relationship and reassurance. Moreover, certain arguments that play a significant role in the literature on wish-fulfilling medicine and enhancement were not mentioned, such as concepts of disease and the enhancement–treatment dichotomy and ‘suspect norms’. (shrink)

The aim of this study was to determine the opinions of private medical practitioners in Bloemfontein, South Africa, regarding euthanasia of terminally ill patients. This descriptive study was performed amongst a simple random sample of 100 of 230 private medical practitioners in Bloemfontein. Information was obtained through anonymous self-administered questionnaires. Written informed consent was obtained. 68 of the doctors selected completed the questionnaire. Only three refused participation because they were opposed to euthanasia. Respondents were mainly male (74.2%), married (...) (91.9%) and Afrikaans-speaking (91.9%). More were specialists (53.2%) than general practitioners (46.8%). A smaller percentage (35.5%) would never consider euthanasia for themselves compared to for their patients (46.8%). The decision should be made by the patient (50%), the patient’s doctor with two colleagues (46.8%), close family (45.2%) or a special committee of specialists in ethics and medicine (37.1%). The majority (46.9%) indicated that euthanasia should be performed by an independent doctor trained in euthanasia, followed by the patient’s doctor (30.7%). Notification should mainly be given to a special committee (49.9%). Only 9.8% felt that no notification was necessary. There was strong opposition to prescribing of medication to let the patient die. Withdrawal of essential medical treatment to speed up death was the most acceptable method. Although the responding group was fairly homogeneous, responses varied widely, indicating the complexity of opinions. (shrink)

In bioethics and health policy, we often discuss the appropriate boundaries of public funding; how the interface of public and private purchasers and providers should be organized and regulated receives less attention. In this paper, I discuss ethical and regulatory issues raised at this interface by three medical practice models in which physicians provide insured services while requiring or requesting that patients pay for services or for the non-insured services of the physicians themselves or their associates. This choice for (...) such practice models is different from the decision to design an insurance plan to include or exclude user fees, co-payments and deductibles. I analyze the issues raised with regards to familiar health care values of equity and efficiency, while highlighting additional concerns about fair terms of access, provider integrity, and fair competition. I then analyze the common Canadian regulatory response to block fee models, considering their extension to wellness clinics, with regards to fiduciary standards governing the physician–patient relationship and the role of informed consent. I close by highlighting briefly issues that are of common concern across different fundamental normative frameworks for health policy. (shrink)

In Italy, judicial and extrajudicial requests for paternity testing have increased in recent years. A retrospective analysis of such private extrajudicial requests received by the legal medicine unit of the Department of Environmental Medicine and Public Health of Padua University was conducted to identify problem areas most helpful in determining whether to accept private parties’ requests for paternity testing. Such testing is most delicate when a presumptive father may be seeking to disown paternity and when testing (...) is wanted without the consent of a member of the mother–child–father triangle. Tests that could establish paternity where none has been recognised are less problematic, as the child will not lose out. Legal and ethical–deontological aspects of consent, of the protection of minors and of children’s and parents’ need for follow-up interviews to deal with the outcome of such testing are carefully considered by the Padua University team when deciding whether to accept a request for testing. It is argued that because such issues are not dealt with by mail-order laboratories, the use of such services is inappropriate. (shrink)

Precision medicine is emerging as a scientific bandwagon within the contemporary biomedical sciences in the United States. PM brings together concepts and tools from genomics and bioinformatics to develop better diagnostics and therapies based on individualized information. Developing countries like China and Brazil have also begun pursuing PM projects, motivated by a desire to claim genomic sovereignty over its population. In spite of commonalities, institutional arrangements produced by the history of genomics research in China and Brazil are ushering PM (...) along different trajectories. In the Chinese case, we identify a strong state-backed push for PM combined with a dynamic network of international academic and private actors along the lines of networked technonationalism that has made large-scale, speculative PM projects possible. The Brazilian case is characterized by an institutional void at the federal level in which PM is driven by domestic academic actors in universities in the regional level, resulting in smaller scale, needs-driven PM projects. Through these cases, this paper shows how a scientific bandwagon adapts to national histories and institutions. Through this peripheral translation of the scientific bandwagon, the global infrastructure of biomedical knowledge has the potential to be transformed. (shrink)

There is no cure or vaccine for HIV/AIDS. The only life-prolonging treatment available is antiretroviral (ARV) therapy. WHO estimates, however, that less than 5 percent of those who require treatment in developing countries currently enjoy access to these medicines. In Africa fewer than 50,000 people–less than 2 percent of the people in need–currently receive ARV therapy. These facts have elicited strongly divergent reactions, and views about the appropriate response to this crisis have varied widely.The intensity of the debate concerning access (...) to life-prolonging medicines for the treatment of HIV/AIDS, and the heated rhetoric with which they are often conducted, suggest that these disagreements may be rooted in deeper disagreements of value. It is not obvious, however, what disagreements of value are at stake in this debate. By analyzing the statements of scholars, public officials, activist organizations, and private sector representatives, each of whom may endorse very different policy recommendations on access to HIV/AIDS drugs, we have identified and created a typology of the different sources of disagreement in the debate. We conclude that the central disagreements concerning access to medicines arise from competing understandings of how responsibilities for bringing remedy to hardships should be allocated to different agents and institutions. A central lesson that emerges from our analysis is that thinking about “health equity” must extend beyond the explanation and justification of goals, values, and ideals, and engage more honestly with the difficult question of how responsibilities for bringing remedy to health crises should be allocated in complex social contexts. (shrink)

Complementary and alternative medicine research presents unique problems for research ethics committees which must be considered in some detail. Applying conventional research techniques to CAM raises a number of issues which ethics committees may find challenging. CAM is widely available and this will have a substantial effect on any proposed research strategy as so many individuals will have pre-existing opinions about these treatments. Whilst many complementary therapies may eventually be ‘validated’ by appropriate clinical trial methodologies other research methods could (...) be more appropriate in the early stages of a research strategy, particularly in view of the widespread availability in both the public and private sectors. Safety, efficacy, cost-effectiveness and patient preference also need evaluation; and these cannot be adequately assessed through double blind randomised placebo controlled trials. If the research question is clear, then thoughtful and often innovative evaluative processes can be designed to answer the socially and clinically relevant issues posed by this area of medicine. There are a number of agencies and organizations available to offer advice to ethics committees in this newly emerging field of CAM research including CAM Strategy Research and Development, the Foundation for Integrated Health and the Research Council for Complementary Medicine. (shrink)

Virtually all Americans are part of the health care system. They may be patients, health professionals, employers providing benefits, insurers, medical manufacturers, regulators, innovators, or investors. Each has a stake in this burgeoning sector of the United States economy, and each may be critically affected, in multiple and diverse ways, by changes to the system under health reform. As health care expenditures continue to rise, it is increasingly important to understand where these expenditures go and the factors that drive these (...) cost increases. This article examines health care expenditure patterns, considering both the “usual suspects” that frequently are cited as spending drivers, as well as certain significant dynamics that may be the main contributors to rising costs. We conclude that in order to successfully contain costs, health reform will need to address these underlying factors. (shrink)

The Private Finance Initiative (PFI) is a specific example of health care privatization within the British National Health Service. In this essay, I critically assess the ways in which various Private Finance Initiatives have increased health care efficiency and effectiveness, as well as encouraged medical innovation. Indeed, as the analysis will demonstrate, significant empirical evidence supports the conclusion that Private Finance Initiatives are a driving force of innovation within the British Health Care System.

Health care spending comprises about 16% of the total United States gross domestic product and continues to rise. This article examines patterns of health care spending and the factors underlying their proportional growth. We examine the “usual suspects” most frequently cited as drivers of health care costs and explain why these may not be as important as they seem. We suggest that the drive for technological advancement, coupled with the entrepreneurial nature of the health care industry, has produced inherently inequitable (...) and unsustainable health care expenditure and growth patterns. Successful health reform will need to address these factors and their consequences. (shrink)

Arguments against the possible use of genetic test results in private health and life insurance predominantly refer to the problem of certain gene carriers failing to obtain affordable insurance cover. However, some moral intuitions speaking against this practice seem to be more fundamental than mere concerns about adverse distributional effects. In their perspective, the central ethical problem is not that some people might fail to get insurance cover because of their ‘bad genes’, but rather that some people would manage (...) to get insurance cover because of their ‘good genes’. This paper tries to highlight the ethical background of these intuitions. Their guiding idea appears to be that, by pointing to his favourable test results, a customer might make an attempt to ‘sell his body’. The rationale of this concept is developed and its applicability to the case at issue is critically investigated. The aim is to clarify an essential objection against the use of genetic information in private insurance which has not yet been openly addressed in the academic debate of the topic. (shrink)

Ethics of Everyday Medicine: Explorations of Justice examines and analyses the relatively unexplored domain of ethics involved in the everyday practice of medicine. From the author's clinical experience, virtually every decision made in the day-to-day practice of medicine is fundamentally an ethical question, as virtually every decision hinge on some value judgment that goes beyond the medical facts of the matter. The first part of the book is devoted to medical decision cases in several areas of (...) class='Hi'>medicine. These cases highlight elements of the current healthcare ecosystem, involving players other than the physician and patient. Insurers (private, commercial, and governmental), administrators, and regulators' perspectives are surfaced in point of care case analysis. Part two contributes to the development of actionable tools to develop better ethical systems for the everyday practice of medicine by providing a critical analysis of Reflective Equilibrium and ethical induction from the perspective of logic and statistics. The chapter on Justice discusses the neurophysiological representations of just and unjust behaviours. The chapter on Ethical Theories follows, describing the epistemic conundrum, principlism, reproducibility, abstraction, chaos and complexity. The following chapter approaches ethical decisions from the logic and statistic perspectives. The following chapter, The Patient as Parenthetical, the author discusses patient-centric ethics, and the rise of business- and government-cetric ethics. The final chapter, A Framework to Frame the Questions for Explore Further, proposes a working framework to deal with current ethical issues. (shrink)

Despite an increasingly growth of professional guidelines, textbooks and research about ethics in health care, awareness about ethics in Danish physiotherapy private practice seen vague. This article explores how physiotherapists in Danish private practice, from an ethical perspective, perceive to practice physiotherapy. The empirical data consists of interviews with twenty-one physiotherapists. The interviews are analysed from a hermeneutic approach, inspired by Ricoeur’s textual interpretation of distanciation. The analysis follows three phases: naïve reading, structural analysis and comprehensive analysis. Four (...) main themes are constructed: Beneficence as the driving force; Disciplining the patient through the course of physiotherapy; Balancing between being a trustworthy professional and a businessperson; The dream of a code of practice. Private practice physiotherapy is embedded in a structural frame directed by both political and economical conditions that shape the conditions for practicing physiotherapy. It means that beneficence in practice is a balance between the patient, the physiotherapists themselves and the business. Beneficence towards the patient is expressed as an implicit demand. Physiotherapeutic practice is expressed as being an integration of professionalism and personality which implies that the physiotherapists also have to benefit themselves. Private practice seems to be driven by a paternalistic approach towards the patient, where disciplining the patient is a crucial element of practice, in order to optimise profit. Physiotherapists wish for a more beneficent practice in the future by aiming at bridging ‘to be’ and ‘ought to be’. (shrink)

Background We aimed to examine the ethical concerns Singaporeans have about sharing health-data for precision medicine and identify suggestions for governance strategies. Just as Asian genomes are under-represented in PM, the views of Asian populations about the risks and benefits of data sharing are under-represented in prior attitudinal research. Methods We conducted seven focus groups with 62 participants in Singapore from May to July 2019. They were conducted in three languages and analysed with qualitative content and thematic analysis. Results (...) Four key themes emerged: nuanced understandings of data security and data sensitivity; trade-offs between data protection and research benefits; trust in the public and private sectors; and governance and control options. Participants were aware of the inherent risks associated with data sharing for research. Participants expressed conditional support for data sharing, including genomic sequence data and information contained within electronic medical records. This support included sharing data with researchers from universities and healthcare institutions, both in Singapore and overseas. Support was conditional on the perceived social value of the research and appropriate de-identification and data security processes. Participants suggested that a data sharing oversight body would help strengthen public trust and comfort in data research for PM in Singapore. Conclusion Maintenance of public trust in data security systems and governance regimes can enhance participation in PM and data sharing for research. Contrary to themes in much prior research, participants demonstrated a sophisticated understanding of the inherent risks of data sharing, analysed trade-offs between risks and potential benefits of PM, and often adopted an international perspective. (shrink)

The goal of military medicine is to conserve the fighting force necessary to prosecute just wars. Just wars are defensive or humanitarian. A defensive war protects one's people or nation. A humanitarian war rescues a foreign, persecuted people or nation from grave human rights abuse. To provide medical care during armed conflict, military medical ethics supplements civilian medical ethics with two principles: military-medical necessity and broad beneficence. Military-medical necessity designates the medical means required to pursue national self-defense or humanitarian (...) intervention. While clinical-medical necessity directs care to satisfy urgent medical needs, military-medical necessity utilizes medical care to satisfy the just aims of war. Military medicine may therefore attend the lightly wounded before the critically wounded or use medical care to win hearts and minds. The underlying principle is broad, not narrow, beneficence. The latter addresses private interests, while broad beneficence responds to the collective welfare of the political community. (shrink)

ABSTRACTMedicines that are vital for the saving and preserving of life in conditions of public health emergency or endemic serious disease are known as essential medicines. In many developing world settings such medicines may be unavailable, or unaffordably expensive for the majority of those in need of them. Furthermore, for many serious diseases these essential medicines are protected by patents that permit the patent‐holder to operate a monopoly on their manufacture and supply, and to price these medicines well above marginal (...) cost. Recent international legal doctrine has placed great stress on the need to globalise intellectual property rights protections, and on the rights of intellectual property rights holders to have their property rights enforced. Although international intellectual property rights law does permit compulsory licensing of protected inventions in the interests of public health, the use of this right by sovereign states has proved highly controversial. In this paper I give an argument in support of states’ sovereign right to expropriate private intellectual property in conditions of public health emergency. This argument turns on a social contract argument for the legitimacy of states. The argument shows, further, that under some circumstances states are not merely permitted compulsory to license inventions, but are actually obliged to do so, on pain of failure of their legitimacy as sovereign states. The argument draws freely on a loose interpretation of Thomas Hobbes's arguments in his Leviathan, and on an analogy between his state of War and the situation of public health disasters. (shrink)

En novembre 1984, Christa Wolf ouvrait la première conférence de l'association des gynécologues psy-chosomaticiens de RDA réunis à Mag-Debourg. Dans son discours intitulé "Maladie et privation d'amour", elle s'interrogeait sur l'évolution de la médecine moderne dont les progrès en matière d'appareils médicaux éloignaient toujours davantage les praticiens de leurs patients. Par-delà son regard sur la relation entre l'âme et le corps, Christa Wolf informait aussi des attentes des femmes qui avaient pris au mot les promesses d'égalité des sexes en régime (...) "socialiste réel". Quelques années plus tôt Georges Canguilhem, résistant au scientisme triomphant, se proposait de continuer à penser la médecine comme un art qui devait s'adapter à chaque individu malade. Déplorant la disparition progressive de la clinique, il plaidait pour un dialogue continu entre le patient et le médecin Tandis que Sonia Combe s'appuie sur le discours de Christa Wolf pour appréhender l'expérience communiste à partir de l'étude de genre, revenant sur la double leçon de Christa Wolf et de Canguilhem, Antoine Spire se demande dans quelles conditions un retour de la médecine à la pratique clinique pourrait se faire et répondre à la demande des malades. (shrink)

This volume focuses on issues involving the inviolability of the human body and the decision to end life. The contributors explore the difficulties in framing a public policy that legalizes aid in dying, and return to the more general question of what is the most fair and effective relationship between private medical authority and public policy.

In lieu of an abstract, here is a brief excerpt of the content:Moral Distress in Academic Medicine: My Brother’s Keeper?Lauren B. SmithAs a member of the hospital ethics committee, I’ve become the go–to person for any ethical issues that arise in our Department. Being a pathologist who is interested in ethics, I’m a rare bird. In this role, I get the occasional curbside consult when anyone has a question or concern. Shortly after an ethics lecture to our trainees, one (...) of the junior residents approached me and asked to speak privately. We headed to the cafeteria and found a private table where we could talk. She hesitated, running her fingers through her hair and gazing around the room before speaking.She told me that the trainees were concerned because they had noticed that the pathologists at another institution were not grading one type of cancer the way that they had learned to do this at our hospital. This type of cancer grading is a surrogate for aggressiveness, and, while somewhat flawed, it often determines the staging and adjuvant therapy that the patient will receive. The resident argued that at this hospital, patients were getting assigned cancer grades that were higher than the ones they would receive at our institution. Therefore, a cancer presenting at the other hospital would be considered more aggressive by the clinicians treating the patient.The resident and many of her colleagues had tried to broach this subject with the pathologists. [End Page E18] Many had been brave enough to voice their confusion and concern over the practices. Their efforts, she explained, had been rebuffed. The pathologists assured the residents that they were grading their cases correctly and cited a reference that they used for this purpose. Due to the hierarchical nature of medicine, it is understandably difficult for trainees to confront attending physicians when they have concerns about their clinical cases and diagnostic acumen. Residents and fellows often do not express their concerns for fear of overstepping their roles. In spite of this, many trainees felt that their concerns for the patient made them set aside their own best interest and they spoke up. Moral distress and genuine concern trumped self–interest in this case, which was admirable.At the time of our meeting, I wondered what I could do to help. I am a hematopathologist who specializes in diagnosing leukemias and lymphomas. I know very little about solid tumor diagnosis and treatment. I have not looked at many solid tumors since I was a trainee six years ago. I do not read the literature in that area and I’m not up–to–date on any controversies regarding grading. In summary, I am far from an expert.However, the problem, on a broader scale, was familiar. As pathologists, we may disagree with or question the diagnoses of our colleagues. What is the appropriate course of action when this occurs? This question is an interesting and infinitely complex issue in the realm of pathological diagnosis. If you aren’t a pathologist or a physician, it may be difficult to grasp why there isn’t a right answer in every case. Diagnosing cancer, in many ways, is truly an art as much as a science. Many intersecting variables are at play, including the size and quality of the sample, the experience and training of the pathologist, and the clinical information available at the time of the diagnosis. Some areas are fraught with subjectivity and inter–observer reliability. Some pathologists are more skilled than others. These are realities that no one wishes to freely admit.It is important, however, to differentiate between systematic and random errors. There are many errors that are difficult to predict or avoid. However, systematic errors are the ones that we most want to uncover as they can be fixed with education and awareness. This case appeared to represent a systematic error in which the pathologists at the other hospital were all performing grading in a way that differed from usual practice.I wondered if it would be overstepping my role to speak to the pathologists. I ran the situation by some of the senior pathologists that I know. Many understood my concern but subtly discouraged any action. Many felt... (shrink)

Mass Hysteria examines the medical and cultural practices surrounding pregnancy, new motherhood, and infant feeding. Late eighteenth century transformations in these practices reshaped mothers' bodies, and contemporary norms and routines of prenatal care and early motherhood have inherited the legacy of that era. As a result, mothers are socially positioned in ways that can make it difficult for them to establish and maintain healthy and safe boundaries and appropriate divisions between public and private space.

This paper describes the present resource allocation problems in the Danish tax-based public health care system and presents an analysis of the two policy options put forward as a solution to these problems: (1) explicit rationing of services, and (2) the introduction of two-tiered health care. It is argued that a two-tiered system with a private second tier is unlikely to be acceptable and viable in Denmark, whereas an introduction of a second tier within the public system may be (...) more acceptable. It is further argued that present implicit rationing methods may be unethical and ought to be replaced by explicit rationing. Keywords: justice, resource allocation, two-tiered health care CiteULike Connotea Del.icio.us What's this? (shrink)

The Varsity Medical Debate, between Oxford and Cambridge Universities, brings together practitioners and the public, professors, pupils and members of the polis, to facilitate discussion about ethics and policy within healthcare. The motion on privatizing the National Health Service (NHS) was specifically chosen to reflect the growing sentiment in the UK where further discourse upon models of healthcare was required. Time and again, the outcome of British elections pivots upon the topic of financial sustainability of the NHS. Having recently celebrated (...) its sixtieth anniversary, the NHS has become heavily politicized in recent months, especially in the aftermath of the devastating global recession. (shrink)

With its wealth of readily and often publicly available information about Web users’ lives, the Web has created new opportunities for conducting online research. Although digital data are easily accessible, ethical guidelines are inconsistent about how researchers should use them. Some academics claim that traditional ethical principles are sufficient and applicable to online research. However, the Web poses new challenges that compel researchers to reconsider concerns of consent, privacy and anonymity. Based on doctoral research into the investigation of online (...) class='Hi'>medicine purchasing, this article presents a case study involving online forums, and reviews the existing ethical guidance surrounding the Web. The suggestion is that new ethical guidelines, particularly in relation to informed consent and participants’ own perceptions of what is public or private, are needed owing to the unique challenges of online research. (shrink)

The development of human genetics raises a wide range of important ethical questions for us all. The interpersonal dimension of genetic information in particular means that genetics also poses important challenges to the idea of patient-centredness and autonomy in medicine. How ought practical ethical decisions about the new genetics be made given that we appear, moreover, no longer to be able to appeal to unquestioned traditions and widely shared communitarian values? This paper argues that any coherent ethical approach to (...) these questions must be able both to uphold the moral status of the individual and at the same time recognise the communitarian, interpersonal dimensions both of the world in which we live and of personal autonomy itself. The paper then goes on to propose an approach to the resolution of the ethical questions raised by the use of the new genetics in reproductive choice through the development of a coherent and principled process of public reason and justification oriented towards the support and development of personal autonomy. (shrink)