Neglected diseases are severe conditions that mainly affect the world's poorest people. Those suffering from neglected diseases are mostly suffering from tropical infections that have failed to receive priority in pharmaceutical research and development programs, as well as in public health policies aimed at improving availability and access to preventive, diagnostic and curative medicine. The World Health Organization has issued a number of documents directing attention to the plight affecting one third of the world's population, assisted by active (...) support from private organizations, notably the Bill and Melissa Gates Foundation, but the overall situation remains dismal. In the wake of major socioeconomic processes including globalization, steadily growing economic disparity, healthcare inequality, the instability created by rogue states and terrorism, as well as massive migration, and epidemic outbreaks, the features of neglected diseases have been changing. Neglected populations affected by tropical diseases are suffering increasingly from non-infectious degenerative conditions and disabilities due to untreated chronic maladies. Pockets of poverty and neglect can also be detected in high-income countries, contributing to the emergence of new diseases and the reemergence of infections believed to be disappearing such as tuberculosis and the measles. Included in the issues of neglect are rare diseases, mostly of genetic origin, affecting a small number of patients that suffer from multiple life-shortening functional impairment and organ defects. Effective medicines are extremely expensive, allegedly because research and development of appropriate drugs is resources and time consuming, requiring exorbitant prices to recoup investment from a small number of consumers. Bioethics has been tardy in addressing the suffering and destitution of neglected and rare diseases. Convinced that permanently repeated denunciations blunt the sensitivity towards suffering, whereas statistics are bloodless and unable to elicit commitment, this book attempts to explore a different strategy. In an upstream approach, bioethics needs to engage in ethnographic fieldwork that confronts and shares the context in which people suffer, vividly presenting what epidemiological research has blunted into statistical data. Additionally, a downstream approach is suggested, requiring bioethics to vigorously and openly denounce unethical biomedical and pharmaceutical research, misdeeds in registration and marketing of drugs, and misalignment of policies with the unmet healthcare needs of the destitute. More than being critical observers, bioethicists ought to shed lurking conflicts of interests and seek active participation in planning research and public healthcare practices aimed at improving the lives of medically neglected populations. (shrink)

In this article I seek to say what it is for something to count as a neglected disease. I argue that neglect should be defined in terms of efforts at prevention, mitigation and cure, and not solely in terms of research dollars per disability-adjusted life-year. I further argue that the trend towards multifactorialism and risk factor thinking in modern epidemiology has lent credibility to the erroneous view that the primary problem with neglected diseases is a lack of (...) research. A more restrictive contrastive model of disease is endorsed as better suited to the definition of neglected disease. (shrink)

In this paper we make a proposal for reforming biomedical research that is aimed to align re-search more closely with the so-called fair-share principle according to which the proportions of global resources as-signed to different diseases should agree with the ratios of human suffering associated with those diseases.

In this paper we make a proposal for reforming biomedical research that is aimed to align re-search more closely with the so-called fair-share principle according to which the proportions of global resources as-signed to different diseases should agree with the ratios of human suffering associated with those diseases.

In this paper we make a proposal for reforming biomedical research that is aimed to align research more closely with the so-called fair-share principle according to which the proportions of global resources assigned to different diseases should agree with the ratios of human suffering associated with those diseases.

In a widely cited 2003 article, DiMasi, Hansen, and Grabowski estimated the cost of pharmaceutical research and development to be $1.1 billion per new medicine coming onto the market in 2001. They also estimate that this cost is going up at a real rate of 7.4% annually. According to these estimates, the innovation cost per new medicine today is about $2.1 billion or $2.65 billion.

ABSTRACT Most of the world's health problems afflict poor countries and their poorest inhabitants. There are many reasons why so many people die of poverty‐related causes. One reason is that the poor cannot access many of the existing drugs and technologies they need. Another, is that little of the research and development (R&D) done on new drugs and technologies benefits the poor. There are several proposals on the table that might incentivize pharmaceutical companies to extend access to essential drugs and (...) technologies to the global poor.1 Still, the problem remains – the poor are suffering and dying from lack of access to essential medicines. So, it is worth considering a new alternative. This paper suggests rating pharmaceutical and biotechnology companies based on how some of their policies impact poor people's health. It argues that it might be possible to leverage a rating system to encourage companies to extend access to essential drugs and technologies to the poor. (shrink)

The authors suggest creating a scheme that offers new incentives for research on diseases disproportionately affecting the poor, with the goal of making development of neglected disease vaccines a lucrative endeavor for pharmaceutical companies.

Nipah virus is a priority pathogen that is receiving increasing attention among scientists and in work on epidemic preparedness. Despite this trend, there has been almost no bioethical work examining ethical considerations surrounding the epidemiology, prevention, and treatment of Nipah virus or research that has already begun into animal and human vaccines. In this paper, we advance the case for further work on Nipah virus disease in public health ethics due to the distinct issues it raises concerning communication about (...) the modes of transmission, the burdens of public health surveillance, the recent use of stringent public health measures during epidemics, and social or religious norms intersecting with preventive measures. We also advance the case for further work on Nipah virus disease in research ethics, given ethical issues surrounding potential vaccine trials for a high-fatality disease with sporadic spillover events, the different local contexts where trials may occur, and the potential use of unproven therapeutics during outbreaks. Further bioethics work may help to ensure that research and public health interventions for Nipah virus disease are ethically acceptable and more likely to be effective. (shrink)

Background In the context of limited health care budgets in countries where Neglected Tropical Diseases are endemic, scaling up disease control interventions entails the setting of priorities. However, solutions based solely on cost-effectiveness analyses may lead to biased and insufficiently justified priorities. Objectives The objectives of this paper are to 1) demonstrate how a range of equity concerns can be used to identify feasible priority setting criteria, 2) show how these criteria can be fed into a multi-criteria decision-making (...) matrix, and 3) discuss the conditions under which this decision-making procedure should be carried out in a real-world decision-making context. Methods This paper draws on elements from theories of decision analysis and ethical theories of fair resource allocation. We explore six typical NTD interventions by employing a modified multi-criteria decision analysis model with predefined criteria, drawn from a priority setting guide under development by the WHO. To identify relevant evidence for the six chosen interventions, we searched the PubMed and Cochrane databases. Discussion Our in vitro multi-criteria decision analysis suggested that case management for visceral leishmaniasis should be given a higher priority than mass campaigns to prevent soil-transmitted helminthic infections. This seems to contradict current health care priorities and recommendations in the literature. We also consider procedural conditions that should be met in a contextualised decision-making process and we stress the limitations of this study exercise. Conclusion By exploring how several criteria relevant to the multi-facetted characteristics of NTDs can be taken into account simultaneously, we are able to suggest how improved priority settings among NTDs can be realised. (shrink)

BackgroundIn the context of limited health care budgets in countries where Neglected Tropical Diseases (NTDs) are endemic, scaling up disease control interventions entails the setting of priorities. However, solutions based solely on cost‐effectiveness analyses may lead to biased and insufficiently justified priorities.ObjectivesThe objectives of this paper are to 1) demonstrate how a range of equity concerns can be used to identify feasible priority setting criteria, 2) show how these criteria can be fed into a multi‐criteria decision‐making matrix, and (...) 3) discuss the conditions under which this decision‐making procedure should be carried out in a real‐world decision‐making context.MethodsThis paper draws on elements from theories of decision analysis and ethical theories of fair resource allocation. We explore six typical NTD interventions by employing a modified multi‐criteria decision analysis model with predefined criteria, drawn from a priority setting guide under development by the WHO. To identify relevant evidence for the six chosen interventions, we searched the PubMed and Cochrane databases.DiscussionOur in vitro multi‐criteria decision analysis suggested that case management for visceral leishmaniasis should be given a higher priority than mass campaigns to prevent soil‐transmitted helminthic infections. This seems to contradict current health care priorities and recommendations in the literature. We also consider procedural conditions that should be met in a contextualised decision‐making process and we stress the limitations of this study exercise.ConclusionBy exploring how several criteria relevant to the multi‐facetted characteristics of NTDs can be taken into account simultaneously, we are able to suggest how improved priority settings among NTDs can be realised. (shrink)

Many countries in Africa, and more generally those in the Global South with tropical areas, are plagued by illnesses that the wealthier parts of the world (mainly ‘the West’) neither suffer from nor put systematic effort into preventing, treating or curing. What does an ethic with a recognizably African pedigree entail for the ways various agents ought to respond to such diseases? As many readers will know, a characteristically African ethic prescribes weighty duties to aid on the part of those (...) in a position to do so, and it therefore entails that there should have been much more contribution from the Western, ‘developed’ world. However, what else does it prescribe, say, on the part of sub-Saharan governments and the African Union, and are they in fact doing it? I particularly seek to answer these questions here, by using the 2013-16 Ebola crisis in West Africa to illustrate what should have happened but what by and large did not. (shrink)

Neglected tropical diseases are defined operationally as diseases that prevail in “tropical” regions and are under‐researched, under‐funded, and under‐treated compared with their disease burden. By analysing the adjectives “tropical” and “neglected,” I expose and interrogate the discourses within which the term “neglected tropical disease” derives its meaning. First, I argue that the term “tropical” conjures the notion of “tropicality,” a form of Othering which erroneously explains the disease‐prevalence of “tropical” regions by reference to environmental (...) determinism, rather than colonialism and neocolonialism. Second, I examine the way in which this Othering enables the abjection of tropical regions and their peoples, leading to neglect. I recommend that the term “neglected tropical diseases” be more carefully contextualised within health scholarship, education, and policy. (shrink)

Taking advantage of the fact that they need not replicate their DNA, terminally differentiated neurons only repair their expressed genes and largely dispense with the burden of removing damage from most of their genome. However, they may pay a heavy price for this laxity if unforeseen circumstances, such as a pathological condition like Alzheimer's disease, cause them to re‐enter the cell cycle. The lifetime accumulation of unrepaired lesions in the silent genes of neurons is likely to be significant and (...) may result in aborting the mitotic process and triggering cell death if the cells attempt to express these dormant genes and resume DNA replication. BioEssays 25:168–173, 2003. © 2003 Wiley Periodicals, Inc. (shrink)

Neglected and tropical diseases, pervasive in developing countries, are important contributors to global health inequalities. They remain largely untreated due to lack of effective and affordable treatments. Resource-poor countries cannot afford to develop the public health interventions needed to control neglected diseases. In addition, neglected diseases do not represent an attractive market for pharmaceutical industry. Although a number of international commitments, stated in the Millennium Development Goals, have been made to avert the risk of communicable diseases, tropical (...) diseases still remain neglected due to delays in international assistance. This delay can be explained by the form international cooperation has generally taken, which is limited to promoting countries’ national interests, rather than social justice at a global level. This restricts the international responsibility for global inequalities in health to a humanitarian assistance. We propose an alternative view, arguing that expanding the scope of international cooperation by promoting shared health and economic value at a global level will create new opportunities for innovative, effective and affordable interventions worldwide. It will also promote neglected diseases as a global research priority. We build our argument on a proposal to replace the patenting system that currently regulates pharmaceutical research with a global fund to reward this research based on actual decreases in morbidity and mortality at a global level. We argue that this approach is beneficent because it will decrease global health inequalities and promote social justice worldwide. (shrink)

Until the recent spread of public-private partnerships, pharmaceutical firms had avoided research and development into neglected tropical diseases (NTDs). Because these are diseases that affect the poorest populations in developing regions, research and development initiatives have for the most part depended on the resources and expertise drawn from academia, international organizations, and intermittent state interventions in disease-endemic countries. Over the last few decades, however, public-private product development partnerships (PDPs) have been introducing new collaborative agreements in which the existing (...) resources and expertise combine with the those traditionally withheld by the pharmaceutical industry and global health NGOs. This paper explores recent transformations in the representation of NTDs by examining the shifting logic and spaces of knowledge production which the advent of PDPs has enabled. An analysis of two case studies focused on Chagas disease-related initiatives addresses recurring preoccupations in Science, Technology and Society studies as well as in critical analyses of PDPs: that is, the back-and-forth movement of the disease from being an object of scientific inquiry to a public health concern, and the legitimacy risks and material asymmetries entailed in global health PDPs. Both cases show that it is major global health stakeholders and experts in non-endemic countries, rather than transnational pharmaceutical firms, that exert the greatest influence upon these changing representations: PDPs attempt to expand the preexisting biomedical focus on NTDs by means of incorporating “real world” drug development preoccupations (which I term epistemic shifts), but they also combine their stated global humanitarian aim with security concerns about the diseases spreading to non-endemic, industrialized countries (which I term geographical shifts). (shrink)

The article addresses the role of scarcity in negotiating the relationship between intellectual property, particularly from a legal-economic perspective, and property rights, as understood by transaction cost economics, to shed light on the deadlock faced by those suffering from neglected tropical diseases (NTDs). The consistency of the law and economics fundamentals that support the trade on knowledge goods, namely patents on essential medicines, is put under check by Scott Veitch’s scholarship on legal irresponsibility. The damages that emerge from the (...) operations of the intellectual property system are registered in the novel concept of negative public domain, and are due mainly to the lack of access to treatments that end up being unaffordable, or to innovation that leads to new drugs that is not sufficiently incentivised though price signals. The accountability for such damages is taken into consideration by arguing that the disavowal of responsibility is made possible by the negative public domain, which is balanced by the construction of a positive response through the language of rights. As such, responsibility per se is preserved, evading one instantiation of Teubner’s legal paradoxes, but rendered ineffective by design. In other words, even if the harms endured by those affected by the NTDs can be traced back to the operations of the intellectual property system, there is no one to hold accountable. The main goal pursued through the article is to make such an arrangement explicit, by giving centrality to the notion of scarcity and its interplay between legal and economic theory, alongside the novel concept of negative public domain as a site where the actual consequences of irresponsibility lie, to hopefully inform further critique in subsequent works. (shrink)

"The largest Ebola outbreak to date—first detected in December 2013 and still ongoing as of April 2015—has cast new light on the shortfalls of international public health systems.1 As in previous health crises, scrutiny has reemerged over the pharmaceutical industry’s ability and willingness to innovate new medicines for underserved disease areas. The public debate has intensified following revelations that promising drug candidates to treat Ebola had gone undeveloped despite compelling preclinical results.2 This lack of development is especially troubling because (...) it occurred after a recently implemented U.S. incentive scheme—the Food and Drug Administration’s (FDA) tropical disease priority review voucher program—designed to counteract exactly this problem. Taking Ebola as a case in point, it is useful to examine the short history and ongoing refinement of this voucher program, since it represents one of the most significant legislative efforts to systematically address the relative absence of com- mercial rewards for drugs targeting tropical diseases. This analysis evaluates the voucher program’s effectiveness for both stimulating private sector innovation and achieving positive health impacts among populations most severely burdened by tropical diseases. It then proposes specific recommendations for how law- makers can improve the program’s legislation to better achieve these objectives. ". (shrink)

Whipple disease is a rare, infectious, disease first described from a single case by Whipple in 1907. As well as characterising the clinical and pathological features of the condition, Whipple made two suggestions regarding its aetiology. These were either than the disease was caused by an infectious agent, or that it was of metabolic origin. As the disease is now thought to be caused by infection with the bacterium Tropheryma whipplei, historical reviews of the history of (...) the disease typically mention only the first of these suggestions. In this paper, we therefore revisit Whipple’s other theory. We argue that a diverse and often successful research programme was developed around this mechanism of disease causation which gave rise to many useful findings on the condition. In the later parts of this article, we then turn to discuss the surprising neglect of this period of Whipple disease research in the current literature, and conclude by offering a brief reconstruction of this early history suitable for use in a technical context. (shrink)

This seminal collection on the ethical issues associated with infectious disease is the first book to correct bioethics’ glaring neglect of this subject. Timely in view of public concern about SARS, AIDS, avian flu, bioterrorism and antibiotic resistance. Brings together new and classic papers by prominent figures. Tackles the ethical issues associated with issues such as quarantine, vaccination policy, pandemic planning, biodefense, wildlife disease and health care in developing countries.

Orphan drug policy often gives ‘special treatment’ to rare diseases, by giving additional priority or making exceptions to specific drugs, based on the rarity of the conditions they aim to treat. This essay argues that the goal of orphan drug policy should be to make prevalence irrelevant to funding decisions. It aims to demonstrate that it is severity, not prevalence, which drives our judgments that important claims are being overlooked when treatments for severe rare diseases are not funded. It shows (...) that prioritising severity avoids problems caused by prioritising rarity, and that it is compatible with a range of normative frameworks. The implications of a severity-based view for drug development are then derived. The severity-based view also accounts for what is wrong with how the current system of drug development unfairly neglects common diseases that burden the developing world. Lastly, the implications of a severity-based view for current orphan drug policies are discussed. There are no data in this work. (shrink)

This seminal collection on the ethical issues associated with infectious disease is the first book to correct bioethics’ glaring neglect of this subject. Timely in view of public concern about SARS, AIDS, avian flu, bioterrorism and antibiotic resistance. Brings together new and classic papers by prominent figures. Tackles the ethical issues associated with issues such as quarantine, vaccination policy, pandemic planning, biodefense, wildlife disease and health care in developing countries.

Non-communicable diseases are no longer largely limited to high-income countries and the elderly. The burden of non-communicable diseases is rising across all country income categories, in part because these diseases have been relatively overlooked on the global health agenda. Historically, communicable diseases have been prioritized in many countries as they were perceived to constitute the greatest disease burden, especially among vulnerable and poor populations, and strategies for prevention and treatment, which had been successful in high-income settings, were considered feasible (...) and often affordable in low-income settings. This prioritization has reduced the communicable diseases burden globally but has left non-communicable diseases largely neglected. A new approach is urgently needed to tackle non-communicable diseases. Based on an analysis of potential features which may have underlain the different approaches to non-communicable diseases and communicable diseases until now, including acuity of disease, potential for control or cure, cost, infectiousness, blaming of individuals and logistical barriers, little ethical or rational justification can be found to support continued neglect of non-communicable diseases. Justice demands access to quality and affordable care for all. An equitable approach to non-communicable diseases is therefore strongly mandated on medical, ethical, economic, and public health grounds. Funding must not however be diverted away from communicable diseases, which continue to require attention—but concomitantly, funding for non-communicable diseases must be increased. International and multi-sectoral action is required to accelerate progress towards true universal health coverage and towards achievement of all of the sustainable development goals, such that prevention and access to care for non-communicable disease can become a global reality. (shrink)

Since the World Health Organization first declared the novel coronavirus a pandemic, diverse strategies have emerged to address it. This paper focuses on two leading strategies, elimination and mitigation, and examines their ethical basis. Elimination or ‘Zero-COVID’ dominates policies in Pacific Rim societies. It sets as a goal zero deaths and seeks to contain transmission using stringent short-term lockdowns, followed by strict find, test, trace and isolate methods. Mitigation, which dominates in the US and most European nations, sets targets for (...) community transmission and lifts restrictions once targets are met. This approach takes calculated risks and regards a certain amount of disease and death as ethically justified. Section I examines different societal responses to risk that underlie these different policy approaches. Section II focuses on ethical arguments favouring Zero-COVID and raises health equity objections. Section III proposes a long-term strategy that balances the twin goals of promoting population health and health equity. There are no data available for this work. (shrink)

Despite unprecedented medical advancements and the near eradi­cation of many serious diseases, there are growing epidemics of preventable illness brought about in part by the overemphasis on individual autonomy and the neglect of obligations to others. Insofar as these diseases develop because of individual choice, this permissiveness hampers the moral analysis of growing epidemics like childhood obesity. While society has contributed to its rapid progression, childhood obesity finds its origins in lifestyle choices implemented at home. Consequently, parents have an unparalleled (...) duty to prevent and correct obesity and unhealthy lifestyles in their children. Failure to do so undoubtedly violates a parent’s duty and suggests medical neglect. However, our current understanding of medical neglect is too narrow to be applicable to chronic, preventable illnesses. Relevant principles of tort law may broaden our understanding of neglect to better reflect the nature of parental and societal liability in preventable illnesses. (shrink)

Despite the enormous progress made in the advancement of health technologies over the last century, infectious diseases continue to cause significant morbidity and mortality in developing countries. Neglected diseases are a subset of infectious diseases that lack treatments that are effective, simple to use, or affordable. Neglected diseases primarily affect populations in poor countries that do not constitute a lucrative market sector, thus failing to provide incentives for the pharmaceutical industry to conduct R&D for these diseases. Of the (...) treatments that do exist for neglected diseases, most are completely out-dated, with poor side-effect profiles, cumbersome logistics of administration, and inadequate efficacy. Historically, the impetus for a majority of neglected disease research was driven by early 20th-century colonialism, and in the post-colonial era, these diseases have been virtually ignored. Of the 1556 New Chemical Entities brought to market during the 30-year period from 1975 to 2004, only 20 — less than 0.02% — were for neglected diseases. (shrink)

There is a conceptual crisis in the biomedical sciences that is particularly salient in psychopathology research. Underlying the crisis is a controversy that pertains to the current medical model of disease that largely draws from causal-mechanistic explanations. The bedrock of this model is the analysis of biological part-dysfunctions that aims at unequivocally defining a pathological condition and demarcating it from its neighboring entities. This endeavor has led to a quest for physiological, biochemical, and genetic signatures. Yet, so far there (...) is little evidence for reliable biomarkers for any mental disorder. The contemporary biomedical paradigm largely ignores historical, dynamic, and system-level aspects—a view that has contributed much to the conceptual disjunction of the patient as a person from his/her disease. Notwithstanding the impressive progress in the biomedical sciences, increasingly more critics question whether the constituting framework is sufficient to convey a comprehensive understanding of illnesses, especially mental illnesses. Thus, the medical model urgently requires an update. But rather than revamping it by methodological advancements, it will be necessary to critically review its philosophical roots. The most problematic issues that require reworking are: the preponderance of the biostatistical theory; the undue decoupling of physiological from evolutionary explanations of function; the clinging to the Modern Synthesis ; and the neglect of dynamic and system-level properties. The proposed overhaul requires the heeding of historical explanations that draw from the Extended Evolutionary Synthesis as well as systems biology approaches for tackling multilevel and dynamic phenomena of complex systems. (shrink)

This paper provides an introduction to the history of the concept of “emerging infectious diseases” (EID) and reflects on how humanities and social science scholars have interacted with it. It starts with a chronological outline of the coinage of the concept in the early 1990s in the wake of the shocks provoked by Ebola and HIV/AIDS, which disrupted the idea that the West was transitioning from a period of infectious diseases to one of chronic diseases. We argue that humanities and (...) social science scholars in disciplines such as history, anthropology, STS, and literature studies have critically explored the concept, showing how entrenched it was in the perceptions of the US and Europe about threats posed by the rest of the globe. Moreover, we explore how scholars in the humanities have used the EID concept to comment on contemporary realities and mobilized it to create dialogues with scientists, especially during the COVID-19 pandemic. Subsequently, we explore how the growing contemporary interest in EID has pushed historians to research the ontological and epistemological factors that enabled the “emergence” of diseases long before the invention of the EID concept, such as plague, Chagas disease, and sleeping sickness, as well as the factors that transformed these and other emerging diseases into pandemics. We conclude by outlining a few neglected factors in the EID literature that could be addressed: the circulation and reception of the concept outside of the West, the examination of EID as a problem for wild animals and not just for humans, and global histories of disease emergence as an epistemological and social process. (shrink)

We outline some ways in which motor neglect (the underutilization of a limb despite adequate strength) and hysterical paralysis (failure to move a limb despite no relevant structural damage or disease) may throw light on the pathophysiology of catatonia. We also comment on the manifold inadequacies of distinguishing too firmly between symptoms of “neurologic origin” and of “psychiatric origin.”.

The fair distribution of health resources is critical to health justice. But distributing healthcare equitably requires careful attention to the existing distribution of other resources, and the economic system which produces these inequalities. Health is strongly determined by socioeconomic factors, such as the effects of racism on the health of communities of colour, as well as the broader market-oriented healthcare and pharmaceutical systems that put the pursuit of profit above the alleviation of suffering. Two papers in this issue confront health (...) injustices at different scales, and make far-reaching recommendations for more just healthcare allocation policies. Orphan drugs are those that pharmaceutical companies are unwilling to develop unless they are offered financial incentives to do so. When a target patient group is very small, or very poor, producing drugs is unprofitable. If patients are to benefit from these drugs in a marketised pharmaceutical regime, governments must step in to provide incentives for research and development. Yet government spending ought to prioritise value for money, and is generally guided by a utilitarian framework. In the case of neglected tropical diseases, there is no moral conflict: large numbers of people would benefit greatly from these treatments. However, there are practical limitations: the governments of affected populations are often unable to fund incentives for research and development, and solidarity from elsewhere is limited.1 2 In the case of rare diseases, Global North governments usually can afford to incentivise the development of treatments to serve their populations, but given the small numbers of beneficiaries, doing so seems a questionable use of resources. Many Global North governments make an exception to the general utilitarian heuristic to accommodate the moral intuition that the claims of a person with a rare …. (shrink)

In a recent article, Marilyn Baffoe-Bonnie offers three arguments for conducting CRISPR/Cas9 biotechnology research to cure sickle-cell disease (SCD) based on addressing historical and current injustices in SCD research and care. I show that her second and third arguments suffer from roughly the same defect, which is that they really argue for something else rather than for conducting CRISPR/Cas9 research in particular. For instance, the second argument argues that conducting this gene therapy research would improve the relationship between SCD (...) sufferers (who are mostly of African descent) and health care providers. But really what is essential in improving this relationship is for those providers to genuinely care and be concerned, and this could be lacking even with the CRISPR research being done. Indeed, this relationship could be improved even without that research being done, as long as there is genuine concern. Thus, this argument actually argues for the need for genuine concern. As for the third argument, one (of two) problems arises because it claims that CRISPR research for SCD should be pursued because the benefits would be shared by even non-research-participants, as non-participants would be encouraged. However, this argues for any research for SCD, not for CRISPR research in particular. I conclude that a better justice-based argument will use only Baffoe-Bonnie’s first argument, which is based on historic neglect of an actual cure for SCD (going beyond merely management or transplant therapies). (shrink)

The fact that the emergence of “technoscience,” resulting from the coalescing of science and technology, may have serious social and cultural impact has been debated in recent years particularly with regard to the field of medicine. The present article is exploring the scope and limits of the “technoscientization” of medicine using the example of rare disease patient associations. It is investigated whether and to what extent these organizations adopt technoscientific illness identities and subscribe to the research priorities and objectives (...) of biomedicine. In addition, it is analyzed whether Paul Rabinow’s highly influential concept of biosociality entails a technoscientific model of identity or, quite to the contrary, offers a framework for contesting biomedical ascriptions of identities. As the article shows, patient associations do refer to technoscientific definitions of diseases yet constantly modify and transform them based on their everyday illness experiences. Likewise, the “biosociality” of rare disease patients emerges from the shared experience of having been neglected by mainstream medical research rather than from supposedly objective biomedical classifications. (shrink)

Background Noninvasive prenatal testing (NIPT) designed to screen for fetal genetic conditions, is increasingly being implemented as a part of routine prenatal care screening in the United States (US). However, these advances in reproductive genetic technology necessitate empirical research on the ethical and social implications of NIPT among populations underrepresented in genetic research, particularly Black women with sickle cell disease (SCD).Methods Forty (N = 40) semi-structured interviews were conducted virtually with Black women in the US (19 participants with SCD; (...) 21 participants without SCD) from June 2021 to January 2022. We employed a qualitative approach to examine the study participants’ perceptions of the potential advancement of NIPT for screening SCD in the fetus. Data were analyzed using NVivo 12 qualitative software.Results The themes revealed the complexities involving the intersectional lived experiences of SCD, prenatal care, lack of synergy among health providers, and NIPT decision-making. The results further revealed that even when Black women have shared commonalities in their lived experiences while navigating SCD and motherhood, their perceptions of NIPT screening technologies are divergent.Conclusion Expanding the ethical discourse on the social implications of NIPT is critical to fully elucidate how Black women perceive NIPT’s utility, particularly as NIPT advances to screen for SCD in the fetus. Neglecting to include Black women with genetic conditions in empirical studies on NIPT may contribute to ongoing health inequities and limit and constrain reproductive choices among Black women with and without SCD. (shrink)

Currently our assessment of whether someone is a good parent depends on the environmental inputs (or lack of such inputs) they give their children. But new genetic intervention technologies, to which we may soon have access, mean that how good a parent is will depend also on the genetic inputs they give their children. Each new piece of available technology threatens to open up another way that we can neglect our children. Our obligations to our children and our susceptibilities to (...) corresponding legal and moral sanctions may be about to explosively increase. In this paper I argue that we should treat conventional neglect and 'genetic neglect'– failing to use genetic intervention technologies to prevent serious diseases and disabilities – morally consistently. I conclude that in a range of cases parents will have a moral obligation to use genetic treatments to prevent serious disabilities in their children. My particular focus is on prenatal interventions and their impact of the bodily integrity of expectant mothers. I conclude that although bodily integrity constrains moral obligations, it is outweighed in a range of cases. (shrink)

The impact of stress and other psychological variables on Inflammatory Bowel Disease prognosis, treatment response, and functional level is well-established; however, typical IBD treatment focuses on the physiological pathology of the disease and neglects complementary stress-reducing interventions. Recent pilot studies report the benefits of mindfulness-based interventions in people living with IBD, but are limited by small sample sizes. Recruitment challenges to in-person studies may be in part due to the difficulty IBD patients often have adhering to fixed schedules (...) and travel as a result of IBD symptoms such as pain, fatigue, and incontinence. The current study aimed to address this barrier by offering participants access to online mindfulness training, allowing individuals to engage with intervention materials to fit their own schedule. Online mindfulness programs have gained popularity in recent years, as they increase access and flexibility and decrease cost to the user; however, the dropout rate tends to be high. The current study compared the rate of adherence and efficacy of mindfulness training as a function of level of support: self-guided versus supported. Analysis revealed no significant difference in the benefits received between participants in the two groups; however, a significant difference group was found in terms of rate of completion, with 44.1% of the supportive group completing the protocol compared to 11.7% of the self-guided. Common challenges to meditation were measured, but did not significantly predict adherence to the intervention, and experience of these challenges did not significantly change over the duration of the study. Implications of the current research, future directions for the use of MBI for IBD patients, and a discussion of methodological considerations are provided. (shrink)

Albert Maslow points out that Wittgenstein dedicated a copy of the Tractatus to Morris Schlick with the following sentence: “ Jeder disese Sätze ist der Ausdruck einer Krankheit ” (Each of this propositions is the manifestation of a disease.) We will try to see some of the treatments to see if the remedy is not, in many cases, worse than the disease. Few philosophical texts have so many material surrounding it as the Tractatus, but and at the same (...) time do maintain such a vast spectrum of interpretations. To the point that one can expect every now and then, exegetical revolutions. Like the political ones, they usually burry the past in its way. An example: the appearance in the 1980s of Wittgenstein's Vienna was a fundamental milestone that showed that it is impossible to dissociate the author from the Viennese intellectual environment. However, attempts have been made to present this new approach as the refutation of the rest, falsely equating the Tractatus with continental philosophy in a book that is really weak in terms of elements of symbolic logic and without any expertise in regard to the philosophy of logic of Frege and Russell, which are essential to understand the context of the concepts in the text of the Tractatus itself and the records of the time. A similar case is the new interpretation that was awarded some ten years later by the North American school: they rightly called attention to the neglect of the essential paradox of the Tractatus of having intended to say what is shown. However, the value of this perspective is lost when the book is treated as the work of a postmodern nihilist, an antimetaphysical dialectician. The same can be said of the interpretation of Raymond Bradley, whose praiseworthy efforts to highlight the Tractarian modal element have resulted in an inadequate Leibnizian framing in his work The Nature of All Being (Bradley, 1992). To show an overview, I would broadly follow the outline of Cerezo (1998), adding and extending his taxonomy a bit. I think Cerezo´s outline is accurate and simple. Cerezo does not take into account contextualist readings or, in any case, it isnt her concern in her Lenguaje y Lógica in Wittgenstein's Tractatus. Let us mention among the ways of reading the Tractatus the empiricist perspectives (in classical version, like Russell, or positivist, like those of Shlick and Carnap ), non-empiricist logicists ( Anscombe, Kenny ), Kantian ( Stenius, Coffa ), metaphysical (in actualist variant, Hacker, or positilist Leibnizian, Bradley), continental (such as Janik and Toulmin ), nihilistic ( Diamond and Conant, Ostrow and his dialectical idea ), and MacGuinn 's elucidatory -ecumenical attempt. David Stern (Stern,1998 ) made a stratification that is not incompatible with the one I point out. 1. The logical-atomistic reading ( logical atomist reading ) of Russell ; 2. The reading of logical positivism ( logical positivist reading ) : with the belligerent antimetaphysical charge ; 3. Metaphysical reading ( metaphysical reading ), like Hacker's, with a logically based idea of metaphysics; 4. The irrationalist reading ( irrationalist reading ) that Toulmin and Janik maintain, for example, or Isidro Reguera, where there is pre-eminence of the religious ethic elements; and 5. therapeutic reading ( therapeutic reading ), which poses it as a kind of infinity joke. We are going to add to the list a reading, which we will call a pathological reading. (shrink)

In the years around 1900 one of the most significant practical consequences of new styles of bacteriological thought and practice was the development of preventive vaccines and therapeutic sera. Historical scholarship has highlighted how approaches rooted in the laboratory methods of Robert Koch, Louis Pasteur and their collaborators were transformed in local contexts and applied in diverse ways to enable more effective disease identification, prevention and treatment. Amongst these, the anti-anthrax serum developed by the Italian physician Achille Sclavo (1861–1930) (...) has received little to no attention from historians. This article positions Sclavo's serum as a neglected but significant presence in British microbiology, which achieved widespread uptake amidst a wave of optimism, despite prolonged uncertainty about its mechanism of action and dosage. After being introduced to Britain in 1904 by the enterprising first medical inspector of factories Thomas Morison Legge, within a matter of months the serum became regarded by medical practitioners as an effective treatment of cutaneous anthrax, though access to ‘fresh’ serum and the necessary speedy diagnosis remained problematic. Like the disease anthrax itself, discussion of ‘Sclavo's serum’ was out of all proportion to the relatively low number of cases, reflecting a deep-seated fascination with the wider possibilities afforded by effective serum therapy. (shrink)

There have been few feminist analyses of the abuse and neglect of elderly women per se. We think that most standard gerontological studies of the abuse and neglect of aging people have not disaggregated the group – elderly people – according to their differences in gender, race, ethnicity, social status, economic well-being, and so on. In contrast, feminist theory has certainly paid attention to gender differences, but many analyses have been surprisingly ageist. Feminists still focus on issues of concern to (...) younger women, giving short shrift to, or simply ignoring, the issues of many older women: chronic diseases, depression, loneliness, and confrontation with their mortality. In this chapter, we point out some of the ways that physical abuse and neglect differ for elderly women. We also argue that feminists, indeed everyone, should be especially concerned about the issues of elderly women as a matter of social justice. Because women still have much heavier caregiving roles and responsibilities than men, they generally reach old age poorer, sicker, and more stretched than men. Thought and efforts must be expanded in order to achieve the continually elusive goal of gender equity. (shrink)

This paper aims to search the question ‘whether the ethical issues of infectious disease, which has been so long considered as a problem in the discipline of bioethics, can be brought under the purview of public health ethics’. To explore the problem I begin with a brief description of the evolution of bioethics. I elaborate the six reasons of neglecting the discussion of infectious diseases in early bioethics as highlighted by Selgelid (2005). Then I analyse the view of Bayer (...) and Fairchild (2004) that how infectious diseases by its own ethical questions, make the shift from the autonomy-centred bioethics to common welfare focused public health ethics. However, I would like to conclude that although the ethical discussion of infectious diseases makes a moral shift from the discipline of bioethics to public health ethics, the latter should not always be solely guided by the principle of beneficence to avoid harm for the sake of community welfare. Public health ethics needs to be guided by the balance of the four biomedical principals, such as beneficence, nonmaleficence, autonomy, and justice. (shrink)

Infectious and parasitic diseases cause enormous health problems in the developing world whereas they leave the developed one relatively unscathed. Research and development (R&D) of drugs for diseases that mainly affect people in developing countries is limited. The problem that relatively few drugs are available for diseases that cause an enormous burden of disease in the developing world is called the 'availability problem'. In recent years, the availability problem has received quite a bit of attention. A number of proposals (...) have been fielded as to how this problem might be minimized. Wild-card patent extensions, advance market commitments, cash prizes and the Health Impact Fund are prominent examples of such proposals. These proposals can be thought of as pull-mechanisms for R&D of drugs for neglected diseases. What has been coined a 'priority review voucher' is another pull-mechanism. This paper is a critical discussion of this pull-mechanism. First, the original priority review voucher scheme, as proposed by Ridley et al. (2006), is described. A number of objections to this scheme are thereafter presented. A few amendments to the original scheme are then suggested, and it is argued that with these amendments in place, the priority review voucher scheme constitutes an attractive way of stimulating R&D of drugs for neglected diseases. (shrink)

Bioethical Proposals to Face Social and Ethical Problems Generated by Neglected Infectious Diseases Propostas bioéticas ante os problemas sociais e éticos que geram as doenças infecciosas desatendidas This review article appointed to the topic of Neglected Tropical Diseases, a group of 18 disabling pathologies, which are sometimes fatal, and often deforming, that prevail in the populations of Asia, Africa and the tropical areas of South America. We presented, categorized, and analyzed, through a bibliographical review, the elements that relate (...) to these diseases from the Universal Declaration of Bioethics and Human Rights, 2005, in terms of equality, justice and equity, the non-discrimination and stigmatization, social responsibility and health approach. Throughout the review, we concluded that the problem around NTDs is multifactorial and we propose solutions to mitigate and to attend the NTDs, from a perspective of focused bioethics around the dignity of the human person and the affected population. We proposed including bioethics in the debate about the care of the NTDs to analyze the problems and examine solutions through transdisciplinary research projects that involve collaborative and formative work among the affected communities, government entities, health professionals and veterinary sciences. Para citar este artículo / To reference this article / Para citar este artigo Sáenz V, Mazzanti di Ruggiero MA. Propuestas bioéticas frente a los problemas sociales y éticos que generan las enfermedades infecciosas desatendidas. Pers Bioet. 2019; 23: 84-110. DOI: https://doi.org/10.5294/pebi.2019.23.1.6 Recepción: 27/09/2018 Aceptación: 06/02/2019. (shrink)

One-third of all human lives end in early death from poverty-related causes. Most of these premature deaths are avoidable through global institutional reforms that would eradicate extreme poverty. Many are also avoidable through global health-system reform that would make medical knowledge freely available as a global public good. The rules should be redesigned so that the development of any new drug is rewarded in proportion to its impact on the global disease burden (not through monopoly rents). This reform would (...) bring drug prices down worldwide close to their marginal cost of production and would powerfully stimulate pharmaceutical research into currently neglected diseases concentrated among the poor. Its feasibility shows that the existing medical-patent regime (trade-related aspects of intellectual property rights—TRIPS—as supplemented by bilateral agreements) is severely unjust—and its imposition a human-rights violation on account of the avoidable mortality and morbidity it foreseeably produces. (shrink)

Any system for the protection of intellectual property rights (IPRs) has three main kinds of distributive effects. It will determine or influence: (a) the types of objects that will be developed and for which IPRs will be sought; (b) the differential access various people will have to these objects; and (c) the distribution of the IPRs themselves among various actors. What this means to the area of pharmaceutical research is that many urgently needed medicines will not be developed at all, (...) that the existing medicines will not be suitable for countries with a precarious health infrastructure or not target the disease variety that is prevalent in poorer regions. Such effects are commonly captured under the rubric of the “10/90 gap” in biomedical research. High prices will also restrict access to medicines as well endanger compliance to treatment schemes. IPRs are mainly held by multinational corporations situated in the developed world, which not only raises egalitarian concerns, but also severely limits the possibilities of companies in poorer countries to realize improvements on existing inventions, as they cannot financially afford to secure freedom to operate, which systematically shrinks the number of potential innovators. Those inequities lead to an enormous burden for the global poor and since no institution is willing to assume the responsibility to fulfil the right to health and the corresponding right of access to essential medicines, we have to analyse alternatives or additions to the actual intellectual property regimes in order to create new incentives to fill this gap. (shrink)

The moral value of health : health as a basic human need -- The human right to health and its corresponding responsibilities -- States and natural persons as subjects of justice -- Pharmaceutical transnational corporations as subjects of justice -- The global health governance of the global health crisis.

In recent years, the biopharmaceutical industry has seen an increase in the development of so-called orphan drugs for the treatment of rare and neglected diseases. This increase has been spurred on by legislation in the United States, Europe, and elsewhere designed to promote orphan drug development. In this article, we examine the drivers of corporate social responsibility (CSR) activities in orphan drug markets and the extent to which biopharmaceutical firms engage in these activities with a strategic orientation. The unique (...) context of orphan drugs constitutes a research opportunity to test the applicability of existing theoretical perspectives on CSR and strategic CSR. Using Schwartz and Carroll’s (Bus Ethics Q, 13(4):503–530, 2003) three-domain approach to CSR and the literature on strategic CSR as a theoretical background, we employ a combination of semi-structured interviews and a quantitative website content analysis to study practices of biopharmaceutical firms in the United States and European Union. Our findings show that both US- and EU-based companies engaged in orphan drugs development perceive their involvement as a responsible business activity beyond the economic dimension of CSR. However, for the majority of these companies their CSR activities do not qualify as strategic according to the criteria established in the literature. We also find significant differences between larger and smaller firms in their use of CSR. Based on these findings, we make several suggestions regarding orphan drug legislation and other measures that might help firms exploit strategic CSR benefits. (shrink)