How will the adoption of genetically modified staple crops reconfigure labor processes in Sub-Saharan Africa? This article focuses on Uganda, where GM varieties of matooke, the country’s primary carbohydrate staple, are expected to be commercialized within the next few years. The paper draws on survey data and focus groups with a random sample of over one hundred and fifty growers to investigate the potential ways a variety engineered to be resistant to banana bacterial wilt might impact labor dynamics. A BBW (...) resistant GM variety will displace labor currently allocated to disease prevention and control, and increase the labor required for harvesting higher yields. How farmers can address the need for more harvesting labor varies significantly according to region. In the southwestern highlands, producers can increase their portion of hired labor. In the central and eastern regions, where farms tend to be smaller and subsistence-oriented, farmers are more likely to intensify their use of unpaid family labor, particularly that of wives. Hence, while GM technology may result in increased yields for small-scale farmers in Uganda, this is likely to come at the cost of intensifying the agricultural labor burdens of women in the central and eastern region. (shrink)

The Global Burden of Disease Study is one of the largest-scale research collaborations in global health, producing critical data for researchers, policy-makers, and health workers about more than 350 diseases, injuries, and risk factors. Such an undertaking is, of course, extremely complex from an empirical perspective. But it also raises complex ethical and philosophical questions. In this volume, a group of leading philosophers, economists, epidemiologists, and policy scholars identify and discuss these philosophical questions. Better appreciating the philosophical dimensions (...) of a study like the GBD can make possible a more sophisticated interpretation of its results, and it can improve epidemiological studies in the future, so that they are better suited to produce results that help us to improve global health. (shrink)

Public funders of health research have been widely criticized on the grounds that their allocations of funding for disease-specific research do not reflect the relative burdens imposed by different diseases. For example, the US National Institutes of Health spends a much greater fraction of its budget on HIV/aids research and a much smaller fraction on migraine research than their relative contribution to the US burden of disease would suggest. Implicit in this criticism is a normative claim: Insofar (...) as the scientific opportunities are equal, each patient merits research into their condition proportional to the burden of disease for which that condition is responsible. This claim—the proportional view—is widely accepted but has never been fully specified or defended. In this paper, I explain what is required to specify the view, attempt to do so in the most charitable way, and then critically evaluate its normative underpinnings. I conclude that a severity-weighted proportional view is defensible. I close by drawing out five key lessons of my analysis for health research priority-setting. (shrink)

Public funders of health research have been widely criticized on the grounds that their allocations of funding for disease-specific research do not reflect the relative burdens imposed by different diseases. For example, the US National Institutes of Health spends a much greater fraction of its budget on HIV/AIDS research and a much smaller fraction on migraine research than their relative contribution to the US burden of disease would suggest. Implicit in this criticism is a normative claim: Insofar (...) as the scientific opportunities are equal, each patient merits research into their condition proportional to the burden of disease for which that condition is responsible. This claim—the proportional view—is widely accepted but has never been fully specified or defended. In this paper, I explain what is required to specify the view, attempt to do so in the most charitable way, and then critically evaluate its normative underpinnings. I conclude that a severity-weighted proportional view is defensible. I close by drawing out five key lessons of my analysis for health research priority-setting. (shrink)

In the Global Burden of Disease study, disease burden is measured as disability-adjusted life years (DALYs). The paramount assumption of the DALY is that it makes sense to aggregate years lived with disability (YLDs) and years of life lost (YLLs). However, this is not smooth sailing. Whereas morbidity (YLD) is something thathappens toan individual, loss of life itself (YLL) occurs when that individual’s life has ended. YLLs quantify something that involves no experience and does not take (...) place among living individuals. This casts doubt on whether the YLL is an individual burden at all. If not, then YLDs and YLLs are incommensurable. There are at least three responses to this problem, only one of which is tenable: a counterfactual account of harm. Taking this strategy necessitates a re-examination of how we count YLLs, particularly at the beginning of life. (shrink)

Not only trauma, mourning and disease, but also disability has been recognised in the Book of Job in which the body plays an exceptional role. The protagonist is suffering physically, psychically and spiritually. Although the word, •–• [be sick, ill], never occurs in the book, his body is portrayed negatively being afflicted by some unknown illness, which would probably exclude him from the community described in Leviticus 13-14. While •’—’—“ [be silent] occurs several times in the book, it never (...) has the alternative meaning of deaf. Yet, his explicit empathy and sacrificial charity –’–’•’’— [for the blind] and –’–’’–’’•’ [for the lame] in 29:15 resonate with his own plight and undermine the possible discriminatory restrictions of like disabled in Leviticus 21:18. In this way, the Book of Job has a transgressive and yet liberating subtext, subverting the idealised body of his status quo. This subtle and veiled critique by the protagonist and therefore the book can be interpreted from a psychoanalytic perspective on physical disability and illness, where the symptoms and alleged imperfections of the body quietly cry out against social and cultural injustice of which they are the projections and mirrors when the context has silenced a concern for the body because of a lack of compassion as it is in the situation of Job. CONTRIBUTION: The intersection and cross-fertilisation of Biblical Studies, Disability Studies and psychoanalytic theory as interdisciplinary approach widens the horizons and deepens the insight of all three research fields, hopefully for the benefit of those who suffer from their bodies, their psyches and their societies. (shrink)

The ArgumentThe remarkable progress in modern genetic technology enables the identification of genes causing devastating diseases and thereby the development of tools for prenatal diagnosis and carrier detection. To implement the results of genetic research in traditional societies, where genetic diseases are more prevalent due to inbreeding, necessitates a culturally appropriate approach that also promotes traditional and societal values important to the relevant community. This paper presents our experience with implementing the results of modern genetic research among the traditional community (...) of the Negev Bedouin of Israel. Although the benefit of using those results for the prevention of genetic diseases seems obvious, successful implementation relies on a carefully designed educational program aimed at changing culturally related attitudes and perceptions. Such a program should attend to the needs of the community and be sensitive to its traditional values. (shrink)

Not only trauma, mourning and disease, but also disability has been recognised in the Book of Job in which the body plays an exceptional role. The protagonist is suffering physically, psychically and spiritually. Although the word, •–• [be sick, ill], never occurs in the book, his body is portrayed negatively being afflicted by some unknown illness, which would probably exclude him from the community described in Leviticus 13-14. While •’—’—“ [be silent] occurs several times in the book, it never (...) has the alternative meaning of deaf. Yet, his explicit empathy and sacrificial charity –’–’•’’— [for the blind] and –’–’’–’’•’ [for the lame] in 29:15 resonate with his own plight and undermine the possible discriminatory restrictions of like disabled in Leviticus 21:18. In this way, the Book of Job has a transgressive and yet liberating subtext, subverting the idealised body of his status quo. This subtle and veiled critique by the protagonist and therefore the book can be interpreted from a psychoanalytic perspective on physical disability and illness, where the symptoms and alleged imperfections of the body quietly cry out against social and cultural injustice of which they are the projections and mirrors when the context has silenced a concern for the body because of a lack of compassion as it is in the situation of Job. CONTRIBUTION: The intersection and cross-fertilisation of Biblical Studies, Disability Studies and psychoanalytic theory as interdisciplinary approach widens the horizons and deepens the insight of all three research fields, hopefully for the benefit of those who suffer from their bodies, their psyches and their societies. (shrink)

Not only trauma, mourning and disease, but also disability has been recognised in the Book of Job in which the body plays an exceptional role. The protagonist is suffering physically, psychically and spiritually. Although the word, חלה [be sick, ill], never occurs in the book, his body is portrayed negatively being afflicted by some unknown illness, which would probably exclude him from the community described in Leviticus 13–14. While חָרֵשׁ [be silent] occurs several times in the book, it never (...) has the alternative meaning of deaf. Yet, his explicit empathy and sacrificial charity לַעִוֵּר [for the blind] and לַפִּסֵּחַ [for the lame] in 29:15 resonate with his own plight and undermine the possible discriminatory restrictions of like disabled in Leviticus 21:18. In this way, the Book of Job has a transgressive and yet liberating subtext, subverting the idealised body of his status quo. This subtle and veiled critique by the protagonist and therefore the book can be interpreted from a psychoanalytic perspective on physical disability and illness, where the symptoms and alleged imperfections of the body quietly cry out against social and cultural injustice of which they are the projections and mirrors when the context has silenced a concern for the body because of a lack of compassion as it is in the situation of Job. Contribution: The intersection and cross-fertilisation of Biblical Studies, Disability Studies and psychoanalytic theory as interdisciplinary approach widens the horizons and deepens the insight of all three research fields, hopefully for the benefit of those who suffer from their bodies, their psyches and their societies. (shrink)

Alzheimer's disease is the most common neurodegenerative disorder in today's developed world that is also increasingly picked out as a focal theme in fictional literature. In dealing with the subjectivity of human experience, such literature enhances the reader's empathy and is able to teach about moral, emotional and philosophical issues, offering the chance to see situations from a position otherwise possibly never taken by the reader. The understanding and insight so gained may well be unscientific, but the literary approach (...) offers an insight into the whole person's perspective and the particularity and uniqueness of a situation that includes ethical conflicts. A key motif of fictional literature centred around dementia remains the burden the adult-child carer is confronted with, considering the parent's remorseless decline and personality change, the sudden demand for devoted and continuous care, and the constantly changing relationship with the declining parent. In the context of an ever increasing demand for a constructive public discussion regarding end-of-life treatment of demented patients, Christine Devars (Le Piano Désaccordé) and Andrés Barba (Ahora Tocad Música de Baile) illustrate how powerful and burdensome the impact of Alzheimer's disease is on both patient and carer and what extremes may be reached under such truly exceptional circumstances. (shrink)

This chapter suggests that descriptive epidemiological studies like the Global Burden of Disease Study can usefully be divided into four tasks: describing individuals’ health states over time, assessing their health states under a range of counterfactual scenarios, summarizing the information collected, and then packaging it for presentation. The authors show that each of these tasks raises important and challenging ethical questions. They comment on some of the philosophical issues involved in measuring health states, attributing causes to health outcomes, (...) choosing the counterfactual against which to assess causes, aggregating and summarizing complex information across multiple domains, discounting, age-weighting, handling fetal deaths, measuring health inequalities, representing uncertainty, and assessing personal responsibility for health outcomes. (shrink)

The Global Burden of Disease project quantifies the impact of different health conditions by combining information about morbidity and premature mortality within a single metric, the Disability Adjusted Life Year. One important goal for the GBD project has been to inform decisions about global health priorities. A number of recent studies have used GBD data to argue that global health funding fails to align with the GBD. We argue that these studies’ shared assumption that global health resources should (...) ‘align’ with the burden of disease is unfounded and has troubling implications. First, since the allocation of resources involves difficult trade-offs between different, potentially competing goals, any ‘misalignment’ of allocation and disease burdens need not necessarily indicate that the allocation of funds fails to meet recipient countries’ needs or interests. Second, using alignment as a baseline implicitly makes controversial assumptions about how harms of different magnitudes affecting different numbers of individuals should be aggregated. We discuss two alternative ways in which GBD data could help inform decisions about resource allocation, neither of which gives more than a limited role to GBD data. (shrink)

Although an invasive medical intervention, Deep Brain Stimulation (DBS) has been regarded as an efficient and safe treatment of Parkinson’s disease for the last 20 years. In terms of clinical ethics, it is worth asking whether the use of DBS may have unanticipated negative effects similar to those associated with other types of psychosurgery. Clinical studies of epileptic patients who have undergone an anterior temporal lobectomy have identified a range of side effects and complications in a number of domains: (...) psychological, behavioural, affective and social. In many cases, patients express difficulty adjusting from being chronically ill to their new status as ‘treated’ or ‘seizure free’. This postoperative response adjustment has been described in the literature on epilepsy as the ‘Burden of Normality’ (BoN) syndrome. Most of the discussion about DBS postoperative changes to self is focused on abnormal side effects caused by the intervention (ie, hypersexuality, hypomania, etc). By contrast, relatively little attention is paid to the idea that successfully ‘treated’ individuals might experience difficulties in adjusting to becoming ‘normal’. The purpose of this paper is (1) to articulate the postoperative DBS psychosocial adjustment process in terms of the BoN syndrome, (2) to address whether the BoN syndrome illustrates that DBS treatment poses a threat to the patient’s identity, and (3) to examine whether the current framework for rehabilitation after DBS procedures should be updated and take into account the BoN syndrome as a postoperative self-change response. (shrink)

This chapter contains sections titled: The Case for Restricting the Civil Liberties of the Cognitively Disabled Two Conceptions of Competence Further Topics Editor's Note.

The notion of being a burden to others is mostly discussed in the context of care‐intensive diseases or end‐of‐life decisions. But the notion is also crucial in decision‐making at the beginning of life, namely regarding prenatal testing. Ever more sophisticated testing methods, especially non‐invasive prenatal testing (NIPT), allow the detection of genetic traits in the unborn child that may cause disabilities. A positive result often influences the decision of the pregnant women towards a termination of the pregnancy. Thus, critics (...) claim that these testing methods send a negative message to people with disabilities. At the core of this is what we call the burden assumption. This assumption claims that children with disabilities are necessarily a burden to others, especially to their parents and other family members. In this paper, we discuss what being a burden to others means in this context and how such an attitude can be avoided without restraining reproductive autonomy. A closer examination shows that the burden assumption is mostly based on misinformation and a false model of disability. Empirical studies as well as narrative evidence from parents who raise a child with disabilities show that the burden assumption is wrong. Raising a child with disabilities does not necessarily mean a decrease in the quality of life. We show how the burden assumption can be challenged through an advanced genetic counselling that combines empirical evidence with narratives from a first‐person perspective. (shrink)

The coronavirus disease 2019 pandemic had a negative psychological impact on the population at scale, yet it is possible that vulnerable patient populations may experience a heavier burden with increased feelings of anxiety and distress. Cancer patients have to trade-off between the fear of exposing themselves to the virus and the need to continue life-saving medical procedures. The present study investigated the prevalence of generalized anxiety and post-traumatic stress symptoms in a population of Italian cancer patients and healthy (...) participants in the months following the COVID-19 outbreak. Using standardized measures of PTSS and generalized anxiety, we found that patients experienced higher levels of adverse mental health outcomes. Several variables were found to negatively affect PTSS and anxiety in this population, including the younger age of respondents, having children, and the impossibility to attend regular medical check-ups. These findings stress the importance of maintaining a clear and regular communication with patients throughout future waves of the pandemic and ensure continuity of care in this vulnerable population. Furthermore, this study indicates the need to establish psychological interventions aimed at patients with cancer, targeting especially younger generations who are more likely to experience adverse psychological outcomes. (shrink)

Mental and behavioral disorders represent a significant portion of the public health burden in all countries. The human cost of these disorders is immense, yet treatment options for sufferers are currently limited, with many patients failing to respond sufficiently to available interventions and drugs. High quality ontologies facilitate data aggregation and comparison across different disciplines, and may therefore speed up the translation of primary research into novel therapeutics. Realism-based ontologies describe entities in reality and the relationships between them in (...) such a way that – once formulated in a suitable formal language – the ontologies can be used for sophisticated automated reasoning applications. Reference ontologies can be applied across different contexts in which different, and often mutually incompatible, domain-specific vocabularies have traditionally been used. In this contribution we describe the Mental Functioning Ontology (MF) and Mental Disease Ontology (MD), two realism-based ontologies currently under development for the description of humanmental functioning and disease. We describe the structure and upper levels of the ontologies and preliminary application scenarios, and identify some open questions. (shrink)

Alzheimer disease is a huge and growing societal problem with upwards of 35% of the population over the age of 80 developing the disease. AD results in a loss of memory, the ability to make reasoned and sound decisions, and ultimately the inability to take care of oneself. AD has an impact not only on the sufferer, but their caretakers and loved ones, who must take on a costly and time-consuming burden of care. AD is found in (...) virtually all racial and ethnic groups. Genetic influences on AD are substantial, and there has been a 30 year history of both success and failure. Mutations for rare early onset forms of the disease have been identified, but this information has not yet led to an effective treatment. Multiple common genetic variations have also been identified, and have led to new insights into the potential role of microglia cells in addition to neuronal cells in the brain. Despite intensive efforts, a significant portion of the genetic etiology of AD remains unknown and must be identified. (shrink)

Alzheimer's disease remains the most common form of dementia. Dementia symptoms vary depending on individual personality, life experience, and social and cultural influences. As dementia progresses, involvement of multi-disciplinary health care professionals is needed to manage the disease. Alzheimer research is progressing rapidly. While 5% of all Alzheimer's disease may be genetically determined, the majority is not. Susceptibility genes can reveal the risk of contracting Alzheimer's disease. Early life risk factors such as education, nutrition, and vascular (...) disease may increase the likelihood of dementia in later life. In the United States, two acetylcholinesterase inhibitors have been approved as cognitive enhancers. Possible prevention and symptomatic treatment interventions have focused on estrogen replacement therapy, antioxidants, and anti-inflammatory medications. Research advances have improved the clinical management of dementia. Ethical implications to the patient, family, and society are multiple and remain challenging. (shrink)

BackgroundWorldwide, hepatobiliary cancers are frequent diseases and often accompanied by a poor prognosis. These cancers, with hepatocellular carcinoma and cholangiocarcinoma being the most frequent, are often associated with a considerable amount of psychological burden such as anxiety, depressiveness, and reduced health-related quality of life which may lead to psychiatric comorbidities. This systematic review gives an overview on psychological burden and on the effectiveness of psycho-oncological interventions for patients with HCC and CHC.MethodsThe databases PubMed, PubPsych, and PsycINFO were used (...) and searched using the following combination of terms: AND AND. Studies were eligible for inclusion if investigating patients affected with tumors of the liver and using diagnostic instruments to assess mental health symptoms and research concerning specific psycho-oncological interventions. In total, 1027 studies were screened by one author with regard to title and abstracts. Afterward, the two authors of the paper discussed inclusion of possible articles.ResultsTwelve studies focusing on distress, anxiety, and depression symptoms as well as quality of life among patients with HCC/CHC and three studies on psycho-oncological interventions were included. Patients suffering from hepatobiliary cancers often experience considerable psychological burden. A quarter of patients suffer from depressive symptoms; anxiety is even more common among these patients with almost 40%. The HRQOL of those affected is reduced in almost all areas, suicide rates increased and the level of distress is considerably increased in one third of patients even in comparison to those with other kinds of cancer. By psycho-oncological intervention the prevalence of depressive symptoms and anxiety can be reduced, while the quality of life and also the survival rate of patients with hepatobiliary cancer can be increased.Discussion and ConclusionPsychological burden is high in patients with hepatobiliary cancers as reflected in high levels of depressiveness and anxiety as well as reduced quality of life. The use of psycho-oncological interventions can reduce psychological burden and increase quality of life compared to patients receiving standard support only.Systematic Review Registration, identifier. (shrink)

Securitization of infectious diseases may involve suspension of ordinary human rights and liberties. In the event of an epidemic, therefore, it is important to limit the occasions upon which draconian disease control measures are implemented in the name of security. The term ‘security’, moreover, should not be used too loosely if it is to retain force and meaning in political discourse. It may be argued that the bar for disease securitization should be set high so that it is (...) limited to contexts involving rapidly spreading pathogens. Such an approach, however, would rule out securitization of more slowly spreading, endemic diseases such as HIV/AIDS. An advantage of characterizing HIV/AIDS as a security threat in developing countries, where the burden of the disease is concentrated, is that this is likely to mobilize resources needed to improve the situation there. That is, if HIV/AIDS is convincingly framed as a security threat, then governments may recognize self‐interested reasons to ramp up control measures. Following consideration of arguments for narrow (excluding HIV/AIDS) versus broad (including HIV/AIDS) conceptions of security, we conclude that the legitimacy of ‘securitizing’ HIV/AIDS ultimately turns on empirical and semantic issues, and we emphasize the importance of distinguishing (1) the nature of the threat posed by HIV/AIDS and (2) the measures required to address that threat. (shrink)

Are physicians sometimes morally required to ease caregiver burden? In our paper we defend an affirmative answer to this question. First, we examine the well-established principle that medical care should be centered on the patient. We argue that although this principle seems to give physicians some leeway to lessen caregivers' suffering, it is very restrictive when spelled out precisely. Based on a critical analysis of existing cases for transcending patient-centeredness we then go on to argue that the medical ethos (...) should indeed contain a rule requiring physicians to alleviate caregiver burden under certain circumstances. Finally, we apply our findings to deep brain stimulation (DBS) for Parkinson's disease. We present empirical data from a recent study of DBS indicating that spousal caregivers of Parkinson patients treated with DBS are sometimes deeply troubled by the effects of the therapy and discuss what moral obligations the treating physicians may have in such cases. (shrink)

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)

Rare diseases, defined as having a prevalence inferior to 1/2000, are poorly understood scientifically and medically. Appropriate diagnoses and treatments are scarce, adding to the burden of living with chronic medical conditions. The moral significance of rare disease experiences is often overlooked in qualitative studies conducted with adults living with rare diseases. The concept of morally problematic situations arising from pragmatist ethics shows promise in understanding these experiences. The objectives of this study were to (1) acquire an in-depth (...) understanding of morally problematic situations experienced by adults living with rare diseases in the province of Québec and (2) to develop an integrative model of the concept of morally problematic situations. To this end, an online survey targeting this population was developed through a participatory action research project. Respondents provided 90 long testimonies on the most important morally problematic situations they faced, often in healthcare settings. An integrative model was developed based on various qualitative analyses of these testimonies and relevant literature. The integrative model showcases that morally problematic situations have causes (i.e., contextual and relational factors, personal factors, jeopardized valuations), have affective repercussions (i.e., emotions and feelings, internal tensions), prompt action (i.e., through empowerment strategies leading to the evolution of situations), and elicit outcomes (i.e., factual consequences, residual emotions and feelings, positive or negative resolutions). In sum, this study advances understanding of the moral experiences of adults living with rare diseases while proposing a comprehensive conceptual tool to guide future empirical bioethics research on moral experiences. (shrink)

The word obesity invokes multiple connotations that contain a realm of disparate descriptions ranging from disease to disdain. There are also few other human conditions that cause increased morbidity and mortality and affect millions of individuals worldwide yet is still viewed by many as a character fault or moral failure. Herein we have the opportunity to read the personal reflections of individuals with obesity who have struggled with their weight over a lifetime. Through a series of 12 narratives, the (...) authors collectively share their shame, humiliation, dignity, inner strength and advice for health professionals who they entrust. (shrink)

Currently, the number of individuals affected by Alzheimer’s disease is rapidly increasing, expected to reach 14 million in the United States within 30 years. In spite of this impending crisis, less than 50 percent of primary care physicians disclose the diagnosis of dementia to their patients. This failure negatively impacts not only patients but also caregivers, whom dementia patients require to help them meet their needs and who often serve as important decision makers, either as surrogates or as designated (...) healthcare agents for the patient. If caregivers are not informed about and prepared to deal with the challenges they face, their health, both emotional and physical, is put at risk. We will argue that both patient and caregiver have the right to be informed of the diagnosis, as their interests are intertwined, especially as the disease progresses and the caregiver becomes the primary advocate for the patient. The caregiver of an individual with dementia therefore becomes intimately connected to the patient’s autonomy in a way few caregivers of other diseases do. In this article, we will show that a timely and thorough disclosure of the diagnosis is morally obligated by the core principles of medical ethics. As the population ages, primary care physicians must see themselves in a triadic relationship with both the dementia patient and caregiver, recognizing that the interests of both are deeply interdependent. (shrink)

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)

The Coronavirus disease 2019 pandemic is affecting many areas of life and has led to major changes in undergraduate medical education. Even before the COVID-19 pandemic, high mental burden of medical students has frequently been reported in the literature. Additional pandemic-specific stressors could exacerbate this situation. This study aimed to assess mental health outcomes among medical students during the first semester after the COVID-19 outbreak and perception of the students on how the learning environment has changed. In May (...) 2020, we conducted a cross-sectional survey among undergraduate medical students at a large medical school in Germany. The survey included validated mental health instruments and self-developed items to examine the perception of the study situation during the COVID-19 pandemic. Open-ended questions were analyzed by conventional content analyses. The response rate was 59.2%. Overall, 61.9% of the students reported distress levels above the cutoff. Year 1 students reported significantly higher levels of distress, anxiety and depression than students during their second to fourth year of studies. 48.3% of the students indicated a decrease in their study motivation since the beginning of the COVID-19 pandemic with significant differences between study years. The binary logistic regression model showed that male gender, being in study year 2, higher distress scores and higher symptoms of depression were significantly associated with a higher likelihood for experiencing serious worries. In the open-ended questions on current concerns related to the impact of the COVID-19 pandemic on their studies, students most frequently reported concerns about missing relevant practical learning experience, difficulties with self-regulated learning and self motivation as well as study-related worries. Year 4 students reported significantly more worries about the lack of practical training than students from study years 1 to 3. Analysis of gender differences showed that female students reported more frequently diverse worries. In contrast, female students shared more frequently helpful strategies in all the categories compared to male students. Our findings suggest that medical students experience significant levels of distress and mental burden during the COVID-19 pandemic and highlight the need for ongoing psychological and educational support for medical students during the COVID-19 pandemic and after. (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)

Host defense mechanisms are categorized into different strategies, namely, avoidance, resistance and tolerance. Resistance encompasses mechanisms that directly kill the pathogen while tolerance is mainly concerned with alleviating the harsh consequences of the infection regardless of the pathogen burden. Resistance is well‐known strategy in immunology while tolerance is relatively new. Studies addressed tolerance mainly using mouse models revealing a wide range of interesting tolerance mechanisms. Herein, we aim to emphasize on the interspecies comparative approaches to explore potential new mechanisms (...) of disease tolerance. We will discuss mechanisms of tolerance with focus on those that were revealed using comparative study designs of mammals followed by summarizing the reasons for adopting comparative approaches on disease tolerance studies. Disease tolerance is a relatively new concept in immunology, we believe combining comparative studies with model organism study designs will enhance our understanding to tolerance and unveil new mechanisms of tolerance. (shrink)

BackgroundThis study aimed to elucidate the influence of dementia etiologies on the degree of caregiver burden and determine which factors predict a high caregiving burden.MethodsThis 18-month retrospective cohort study enrolled 630 patients and their caregivers from the Dementia Center of Changhua Christian Hospital. The care team performed face-to-face interviews every 6 months, for 18 months from when a diagnosis of dementia was made. The primary outcome was the change in Zarit Burden Interview scores. Generalized estimating equations were (...) used for the longitudinal data analysis.ResultsParticipants with Lewy body disease had a significantly higher caregiving burden compared with those with Alzheimer's disease after adjusting for patient and caregiver features. Caregivers of mixed-type dementia and frontotemporal dementia experienced a greater burden than caregivers of AD, at 6- and 18-month follow-up. Patients with more severe dementia, neuropsychiatric symptoms, being cared for by more than two caregivers, or utilizing social resources were associated with higher ZBI scores; the depressive mood of caregiver also predicted higher ZBI scores.ConclusionThis longitudinal study demonstrated that caregiver burden was influenced by the underlying dementia etiology of patients. The dementia care team should provide personalized education and transfer patients and caregivers to appropriate resources, especially for high-risk populations. (shrink)

Chronic diseases represent the major illness burden of developed nations. A chronic disease databank system consists of parallel longitudinal data sets from diverse locations describing the courses of thousands of patients with chronic illness over many years. Illustrated by ARAMIS (The American Rheumatism Association Medical Information System), such data resources facilitate analysis of long term health outcomes and the factors associated with particular outcomes. A model for clinical investigation of contemporary disease is presented, based on the overwhelming (...) prevalence of chronic illness, the variability, complexity, and uniqueness of the individual patient course, the difficulties of traditional univariate reductionist approaches, and the time span required for study. In this model, data are systematically accrued and continually analyzed, and the data collected are gradually modified based upon evolving anticipation of future needs. The strategies underlying the development of ARAMIS are described, investigational results summarized, and future directions outlined. Keywords: ARAMIS, Chronic Disease Databanks, Prognosis, Health Outcomes CiteULike Connotea Del.icio.us What's this? (shrink)

Major Depressive Disorder (MDD) is a serious condition with a large disease burden. It is often claimed that MDD is a “brain disease.” What would it mean for MDD to be a brain disease? I argue that the best interpretation of this claim is as offering a substantive empirical hypothesis about the causes of the syndrome of depression. This syndrome-causal conception of disease, combined with the idea that MDD is a disease of the brain, (...) commits the brain disease conception of MDD to the claim that brain dysfunction causes the symptoms of MDD. I argue that this consequence of the brain disease conception of MDD is false. It incorrectly rules out genuine instances of content-sensitive causation between adverse conditions in the world and the characteristic symptoms of MDD. Empirical evidence shows that the major causes of depression are genuinely psychological causes of the symptoms of MDD. This rules out, in many cases, the “brute” causation required by the brain disease conception. The existence of cases of MDD with non-brute causes supports the reinstatement of the old nosological distinction between endogenous and exogenous depression. (shrink)

Attention has become increasingly focused in recent years on the role agri-food system transformations have played in driving the global diet-related chronic disease burden. Identifying the role played by the food-consuming industries (predominantly large manufacturers, processors, distributors, and retailers) in particular, and identifying possibilities to facilitate healthier diets through intervening in these industries, have been identified as a research priority. This paper explores the potential for one promising analytic framework—the nutrition-oriented value chain approach—to contribute to this area, drawing (...) on recent insights from the global value chain (GVC) literature to develop an institutionally-enriched approach. The research focused on a canned deciduous fruit value chain linking growers, processors, and retailers in South Africa and Australia. Findings reveal the multiple drivers which have converged to shape this value chain over time, and the key actors which are influencing product availability, composition, price, and promotion within this sector. With its emphasis on identifying implications for end-consumption, rather than economic outcomes within the chain, nutrition-oriented value chain research represents a significant shift in focus for the GVC framework. Therefore, an immediate opportunity for further research is to extend the analytic framework to primary research on end-consumption behaviours. (shrink)

The rate of individuals diagnosed with Alzheimer’s disease is expected to increase significantly in the coming decades. As more attention is paid to end-of-life care for these patients, questions about the use of assisted nutrition and hydration will become more prevalent. Two recent articles that discuss the use of ANH in patients suffering from advanced Alzheimer’s disease are discussed. The author argues that Pope John Paul II’s designation of medically assisted nutrition and hydration as “ordinary care” does not (...) alleviate the ethical necessity of discerning the benefits and burdens of the procedure for these patients. He argues that tube feeding of patients with advanced Alzheimer’s disease should be considered extraordinary, non-obligatory treatment, but future research is still needed to assess the objective and subjective criteria for making this judgment. National Catholic Bioethics Quarterly 13.3 (Autumn 2013): 469–482. (shrink)

Background Scientific and technological advancements in mapping and understanding the interrelated pathways through which biological and environmental exposures affect disease development create new possibilities for detecting disease risk factors. Early detection of such risk factors may help prevent disease onset or moderate the disease course, thereby decreasing associated disease burden, morbidity, and mortality. However, the ethical implications of screening for disease risk factors are unclear and the current literature provides a fragmented and case-by-case (...) picture. Methods To identify key ethical considerations arising from the early detection of disease risk factors, we performed a systematic scoping review. The Scopus, Embase, and Philosopher’s Index databases were searched for peer-reviewed, academic records, which were included if they were written in English or Dutch and concerned the ethics of (1) early detection of (2) disease risk factors for (3) disease caused by environmental factors or gene-environment interactions. All records were reviewed independently by at least two researchers. Results After screening 2034 titles and abstracts, and 112 full papers, 55 articles were included in the thematic synthesis of the results. We identified eight common ethical themes: (1) Reliability and uncertainty in early detection, (2) autonomy, (3) privacy, (4) beneficence and non-maleficence, (5) downstream burdens on others, (6) responsibility, (7) justice, and (8) medicalization and conceptual disruption. We identified several gaps in the literature, including a relative scarcity of research on ethical considerations associated with environmental preventive health interventions, a dearth of practical suggestions on how to address expressed concerns about overestimating health capacities, and a lack of insights into preventing undue attribution of health responsibility to individuals. Conclusions The ethical concerns arising with the early detection of risk factors are often interrelated and complex. Comprehensive ethical analyses are needed that are better embedded in normative frameworks and also assess and weigh the expected benefits of early risk factor detection. Such research is necessary for developing and implementing responsible and fair preventive health policies. (shrink)

The world is experiencing a cataclysmically increasing burden from chronic illnesses. Chronic diseases are on the advance worldwide and treatment strategies to counter this development are dominated by symptom control and polypharmacy. Thus, chronic conditions are often considered irreversible, implying a slow progression of disease that can only be hampered but not stopped. The current plant-based movement is attempting to alter this way of thinking. Applying a nutrition-first approach, the ultimate goal is either disease remission or reversal. (...) Hereby, ethical questions arise as to whether physicians’ current understanding of chronic illness is outdated and morally reprehensible. In this case, physicians may need to recommend plant-based diets to every patient suffering from chronic conditions, while determining what other socioecological factors and environmental aspects play a role in the chronic disease process. This article provides insights to aspects of diet and chronic illness and discusses how the plant-based movement could redefine current understanding of chronic disease. The ethical justifications for recommending of a plant-based diet are analyzed. The article concludes that not advocating for plant-based nutrition is unethical and harms the planet and patients alike. (shrink)

While vaccination rates in the United States are high — generally over 90 percent — rates of exemptions have been going up, and preventable diseases coming back. Aside from their human cost and the financial cost of treatment imposed on those who become ill, outbreaks impose financial costs on an already burdened public health system, diverting resources from other areas. This article examines the financial costs of non-vaccination, showing how high they can be and what they include. It makes a (...) case for requiring those who do not vaccinate to cover the costs of outbreak caused by their choice. Such recouping is justified because the choice not to vaccinate can easily be seen as negligent. But even if it is not, that choice involves imposing costs on others, and there are good reasons to require the actors to internalize those costs. The article proposes alternative statutory and regulatory schemes to cover the costs imposed on the public purse, focusing on no-fault mechanisms. We consider both ex ante mechanisms like a tax or a fee that will go into a no-fault fund to cover the costs and ex post mechanisms like a statutory authorization for recoupment of those costs by health officials. (shrink)

Human and animal interests are often in conflict. In many situations, however, it is unclear how to evaluate and weigh competing human and animal interests, as the satisfaction of the interests of one group often inevitably occurs at the expense of those of the other group. Human-animal conflicts of this kind give rise to ethical questions. If animals count morally for their own sake, then we must ask in which cases the satisfaction or frustration of the interests of humans and (...) animals in conflict situations is justified or unjustified from an ethical perspective. In this article, we argue that limited aggregation accounts represent a promising means for resolving interspecies conflicts. The reason for this is that they can appropriately consider the qualitative relevance of interests, their relative importance to each other, and the number of individuals affected. For our argument, we start from the premise that animals count morally for their own sake, albeit to a lesser extent than humans. That is, we accept the view that animals may be used, for example, as a source of food or in animal research. However, as we will show, many basic interests of animals are sufficiently similar to human interests and can thus be compared to them. Hence, they ought to be aggregated in cases of conflict with human interests. We illustrate our account and its practical implications with the real-world example of a human-animal conflict during the outbreak of a zoonotic disease among farmed animals. We conclude that, in many cases, animal interests ought to be given more importance than they currently receive, which includes distributing the burdens and risks of farming practices more fairly. (shrink)

Given the resurgence of scientific studies on the etiology of homosexuality in the wake of the AIDS epidemic, this article considers the effects these studies had on contemporaneous queer filmmakers. By using the subject of criminality as a way to talk about homosexual causality, queer films of the 1990s illustrate that contemporary scientific studies on homosexuality were historically and politically situated in relation to cultural anxieties about other forms of deviance. This article focuses on films that dissect the hetero-normative tendency (...) to amalgamate forms of deviance in order to distinguish between the diseased and the healthy. Such products of New Queer Cinema highlight this amalgamation of criminality and homosexuality in order to challenge demands by the LGBT community of the 1980s and 1990s for “more positive images” in film. This article argues that queer filmmakers have manipulated the image of the queer criminal to usurp the medical tendency to biologize and pathologize the notion of queer transgression. In such a way, queer films that enthusiastically dramatize the queer outlaw perpetuate myths about homosexuality in order to dissect and discredit them. (shrink)

The triumvirate of HIV/AIDS, tuberculosis, and malaria have dominated our public health focus in the developing world. Having claimed millions of lives, these infectious diseases have prompted a large-scale response. Concomitant with these efforts has been a burgeoning bioethics literature examining global health and distributive justice. A scholarly waste-land only a decade ago, there is now a growing and rich literature that aims to unpack our moral obligations when it comes to diseases that affect the majority of the world (many (...) living in absolute poverty). Now, added to the persistent challenges posed by infectious diseases is the growing burden of diseases such as cancer, which disproportionately affect .. (shrink)

This study seeks to advance the understanding of controversy resolution in science. I take as a case study conceptualization and treatment of ulcer disease. Analysis of causal accounts and effective treatments illustrate the ways in which competing parallel research programs in medicine embody opposing social, political, and economic forces which are bound to the epistemological dimensions of scientific controversy (e.g., standards of evidence, reference, and inference), and which in turn shift perception of the burden of proof. The analysis (...) illustrates the ways in which (1) medical diagnoses create as much as discover useful distinctions and (2) epistemic and non epistemic values divide scientists into competing research programs, as well as (3) the ways in which these structures often effectively prevent scientific controversy closure. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Alzheimer's Disease, Aging, Chance, and RaceAtwood D. Gaines (bio)KeywordsAlzheimer’s disease, chance, mild cognitive impairment, racism, social constructionsThomas Kirkwood's comments are a welcome, articulate detailing of how and why we age with special reference to the brain. As well, his paper indicates clearly that processes reified as pathology and disease, such as Alzheimer's disease (AD), are in fact common and inevitable as the human brain ages. (...) Doubtless, this is the reason that aging is by far the greatest risk factor for the development of AD. A key notion, briefly mentioned by Kirkwood, is that of chance. He points out that, "cells (will be) burdened with protein aggregates and similar materials that will increase with aging. Once again, which cells will experience this fate and which will continue to function healthily is strongly influenced by chance" (Kirkwood 2006, 80–81). This mention of chance is most important for our paper, "Building a Mystery," and for an understanding of science as well. In "Building a Mystery," Peter Whitehouse and I sought to show that the history of AD was not inevitable and demonstrates a variety of chance and singular decisive occurrences of encounters, interpretations, social movements, government initiatives, and technological developments. Such decisive moments do not occur by virtue of some (natural) lawful process that is unfolding, but rather, these are chance events that could have happened in other ways. Indeed, science has been viewed as human attempts to "tame chance" (Hacking 1990). However, it often does so by sleight of hand, misinterpretation, and the biomedical discourse of hope. Increasingly, we are learning that chance is a commonality, not a rarity, in social and biological domains. The biomedical approach assumes the opposite. For example, it seeks to tame the chance appearance of AD in the case of Auguste D, and does so in part by reifying differences that exist, as Kirkwood notes, along a continuum rather than as the discrete entities implied by the labels Alzheimer's disease or mild cognitive impairment (MCI).We thus stand with Kirkwood's bold recognition of chance (see also Kirkwood 2003) in the biological domain and have applied the same idea to the social domain in which we consider the practice of biomedical science. We have elsewhere emphasized consensus statements in the making of AD (Gaines and Whitehouse 1998). In the present article, we add a number of other chance, decisive sociocultural moments to the mix of social processes producing AD and MCI. We have not considered in detail here a host of cultural features in the theory and practice of biomedicine with respect to AD. These include implicit, yet highly [End Page 83] implicative, cultural notions of bilateral kinship employed in genetic research on AD considered elsewhere (Gaines 1998).Bavidge's comments are cogent as well. With respect to the notion of my concept of the local biology of "race" (Gaines 2005), it is germane to point out here that such culturally constructed biologies are relevant to a discussion of AD and other dementias. Such constructions represent culture in science. We used the dramatic example of "race" in US biomedicine because it is experiencing a resurgence as an explanatory tool. For example, recently Haiman et al. (2006) presented research that suggests that "Among cigarette smokers, African Americans and native Hawaiians are more susceptible to lung cancer than whites, Japanese Americans and Latinos." The authors assert, as have many US studies, that their findings show differences relate to the alleged biology of the social groups concerned. Their problem and that of others, is that the groups are social, not biological, and most have mixed ancestry and do not stem from distinct groups. This is particularly true of African Americans and Latinos; both groups are substantially composed of individuals with European, West African, and Native American ancestry in widely varying proportions (Gaines 2005). Thus, they are different only in terms of their classification. Such work regularly overlooks influences, such as environmental racism, discrimination, poverty, and a lack of medical care, as well as other practices. These might include, in a study of smoking, pakalolo smoking (local marijuana) among Hawaiians, who themselves are usually part Portuguese, Japanese, Chinese, and or European... (shrink)

The article explores the underlying reasons for patients’ self‐perception of being a burden (SPB) in family settings, including its impact on relationships when wishes to die (WTD) are expressed. In a prospective, interview‐based study of WTD in patients with advanced cancer and non‐cancer disease (organ failure, degenerative neurological disease, and frailty) SPB was an important emerging theme. In a sub‐analysis we examined (a) the facets of SPB, (b) correlations between SPB and WTD, and (c) SPB as a (...) relational phenomenon. We analyzed 248 interviews with 62 patients, their family caregivers, and professionals using grounded theory and interpretive phenomenological analysis. SPB appeared as important empathic concern in care situations. Patients expressed many sorts of concerns for others, but also perceived an altered self‐understanding that did not meet mutual expectations within relationships. In SPB associated with WTD three constellations were found: (a) WTD to unburden others; (b) patients decided against hastening death to prevent being a further burden to others (in these cases, the SPB counteracted the wish to die); and (c) both wishes for and against dying were sustained by SPB. These patients often felt paralyzed and suffered deeply. Family caregivers felt emotionally touched by SPB and tried to unburden patients by caring and compassion. We concluded that the impact of SPB on a WTD and the various meanings the facets of SPB have in balancing relationships need to be worked out individually. An early palliative and narrative approach is warranted. (shrink)

Pre-existing medical conditions and co-infections are common to all human populations, although the natures of the pre-existing conditions and the types of co-infections vary. For these reasons, among others, the arrival of a highly infectious pathogenic agent may differentially affect the disease burden in different sub-populations, as a function of varying combinations of endemic disease, chronic disease, genetic or epigenetic vulnerabilities, compromised immunological status, and socially determined risk exposure. The disease burden may also vary (...) considerably by age cohort and socio-economic status. The social consequences of infection, the medical sequelae, and the paths of recovery from infection may also vary, according to these variables. As a result, different sub-populations may have different experiences of a disease process, including when and how an epidemic comes to an end. This essay suggests that historians' engagement with path-breaking biological and medical anthropological research will allow new approaches to understanding disease processes that will enrich the study of epidemics and their endings. It is organized in three sections. The first discusses some general approaches to and assumptions about epidemics that are used by many historians. The second introduces new perspectives on the study of historical epidemics opened up by the medical anthropological concept of syndemic disease interactions and by an engagement with biological scientific perspectives. It briefly discusses two rural epidemics-one of anemia caused by the syndemic interaction of hookworm and malaria co-infections in early 20th-century British Malaya, and the other of rebound infections caused by the loss of acquired immunity to falciparum malaria in mid-20th-century Liberia-that illustrate, respectively, the utility of the concept of syndemic disease interactions and the centrality of immunological status in understanding epidemic outbreaks in these discrete populations. The third section addresses some of the research considerations involved in moving beyond the single pathogen model of epidemic disease. (shrink)