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)

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)

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 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)

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)

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)

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)

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)

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)

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)

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)

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)

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)

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)

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)

Critically examining popular ESL textbooks, this accessible and engaging book uncovers gender and ethnic representations that impact young English language learners in US public schools and provides equitable, egalitarian alternatives.

In late March 2020 in response to the COVID-19 pandemic, Australia introduced mandatory 14-day supervised quarantine at hotels and other designated facilities for all international arrivals. From July 2020, most states and territories introduced a fixed charge for quarantine of up to $3220 per adult. The introduction of the fee was rationalised on the basis that Australians had been allowed sufficient time to return and there was a need to recover some of the cost associated with administering the program. Drawing (...) on an empirical study of 58 returned Australian citizens and residents quarantined between March 2020 and January 2021, this paper aims to explore how people experienced paying for hotel quarantine, particularly with respect to fairness and relatedly, the principle of reciprocity. Reciprocity requires that the state has an obligation to assist individuals in discharging their duty to comply with public health measures and avoid disproportionate burdens accruing to populations or individuals. Though participants had varying opinions on whether they thought it fair to be charged for their quarantine, for many, the fee constituted a significant burden and source of stress. Given the undertaking of quarantine is primarily for the benefit of the public good, we argue the financial cost imposed on individuals does not meet the demands of reciprocity. It is imperative that future quarantine and isolation arrangements consider seriously the need to minimise burdens of individuals subject to such measures, and that fees do not become a new norm in public health and infectious disease control. (shrink)

The German invasion of the Soviet Union in June of 1941 has long been attributed to errors by Joseph Stalin, yet a revisionist position known as the Icebreaker hypothesis has also emerged alleging that Stalin is not to blame. This essay examines why the Icebreaker theory is erroneous based on its lack of concrete facts. The reasons why Operation Barbarossa was so effective are also examined, leading to the conclusion that Stalin should still shoulder most of the blame for Soviet (...) disorganization prior to the invasion. (shrink)

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)

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)

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)

Objectives: While previous research has mainly focused on the impact of the first acute phase of the COVID-19 pandemic on mental health, little empirical knowledge exists about depression, anxiety, and somatic symptom levels and possible predictors of symptom levels in the pandemic’s recovery phase. The present study aimed to analyze the mental burden of a convenience ample of the general German population during the first recovery phase of the pandemic and to identify significant predictors of symptom levels.Methods: Standardized measures (...) of anxiety, depression, somatic symptoms, and health anxiety, as well as measures of COVID-19 fears and possible vulnerability factors, were administered through a national, cross-sectional online survey, asking participants for their current symptom levels and their symptom levels prior to the COVID-19 pandemic.Results: Our findings show significantly elevated levels of depression, anxiety, somatic symptoms, and health anxiety in the recovery period compared to before the pandemic. The current prevalence rates based on self-reporting were 26.7% for depression, 24.5% for anxiety, and 29% for somatization. The strongest predictors of these symptom reports included domain-specific pre-existing symptom levels, neuroticism, biological COVID-19 risk factors, avoidance of illness information, and younger age. The most important predictors of COVID-19 fears were subjective COVID-19 risk perception, followed by pre-existing health anxiety, the number of biological COVID-19 risk factors, older age, neuroticism, avoidance of illness information and female gender.Discussion: These findings indicate the need for specific psychological programs to help individuals with enhanced psychological and biological vulnerability to cope better with the mental distress experienced during all phases of the ongoing COVID-19 crisis. (shrink)

Objective: To investigate the prevalence of and risk factors associated with mental health symptoms in psychiatric outpatients and their family members in China during the COVID-19 pandemic.Methods: This cross-sectional, survey-based, region-stratified study collected demographic data and mental health measurements for depression, anxiety and acute stress from 269 psychiatric patients and 231 family members in the Second Xiangya Hospital in China from April 27, 2020 to May 8, 2020. Binary logistic regression analysis was performed to identify risk factors associated with mental (...) health outcomes.Result: The results of this survey revealed that symptoms of depression, anxiety, and acute stress were highly prevalent symptoms in the psychiatric patient group. Respondents who were female, unmarried or highly educated were significantly more likely to have the above symptoms. In the family member group, more than half of them felt that the burden of nursing had increased during the epidemic. Subjects with a high degree of burden of care were significantly more likely to exhibit the above mental health symptoms, while females were significantly more likely to have acute stress.Conclusions: The results of this survey revealed a high prevalence of mental health disorder symptoms among psychiatric patients and an increased burden of nursing among their family members after the COVID-19 outbreak in China. Understanding the risk factors in those particular groups of people help improve the public health service system for mental health problems during public health events. For further study, exploration of the needs of mental health services and dynamic change tracking will be needed. (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)

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)

"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)

Statutes criminalizing behavior that risks transmission of HIV/AIDS exemplify use of the criminal law against individuals who are victims of infectious disease. These statutes, despite their frequency, are misguided in terms of the goals of the criminal law and the public health aim of reducing overall burdens of disease, for at least three important reasons. First, they identify individual offenders for punishment, a paradigm that is misplaced in the most typical contexts of transmission of infectious disease and (...) even for HIV/AIDS, despite claims of AIDS exceptionalism. Second, although there are examples of individuals who transmit infectious disease in a manner that fits the criminal law paradigm of identification of individual offenders for deterrence or retribution, these examples are limited and can be accommodated by existing criminal laws not devoted specifically to infectious disease. Third, and most importantly, the current criminal laws regarding HIV/AIDS, like many other criminal laws applied to infectious disease transmission, have been misguided in focusing on punishment of the diseased individual as a wrongful transmitter. Instead of individual offenders, activities that enhance the scale of disease transmission—behaviors that might be characterized as ‘transmission facilitation’—are a more appropriate target for the criminal law. Examples are trafficking in human beings (including sex trafficking, organ trafficking, and labor trafficking), suppression of information about the emergence of infection in circumstances in which there is a legally established obligation to disclose, and intentional or reckless activities to discourage disease treatment or prevention. Difficulties remain with justifications for criminalizing even these behaviors, however, most importantly the need for trust in reducing overall burdens of disease, problems in identifying individual responsible offenders, and potential misalignment between static criminal law and the changing nature of infectious disease. (shrink)

Crediting scientific discovery for prolonging life is pervasive in biomedical histories of the genetic blood disorder, sickle cell disease. This includes the preventive strategies, such as newborn screening, that have underwritten the success of its life-extending interventions. Newborn screening is a technology that relies not only upon intact health infrastructures but also expertise and enhanced vigilance on the part of caregivers to anticipate complications while they are still open to circumvention. This paper posits that even after overcoming institutional barriers (...) to make newborn screening equitably available, care and vigilance are resources that are themselves subject to what I term anticipatory politics, where structural conditions also stratify expectations for the future, including the affective appeal of medical innovations. This paper elaborates the paradigm of anticipatory politics through an ethnographic examination of newborn screening to connect the comprehensive care practices that have improved survival for sickle cell disease, and as the burden of mortality shifts to young adulthood, to expose how those who are resourced to care for these futures preferentially stand to benefit from preventive interventions. (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)

IntroductionLittle is known about risk factors for both Long COVID and somatic symptoms that develop in individuals without a history of COVID-19 in response to the pandemic. There is reason to assume an interplay between pathophysiological mechanisms and psychosocial factors in the etiology of symptom persistence.ObjectiveTherefore, this study investigates specific risk factors for somatic symptom deterioration in a cohort of German adults with and without prior SARS-CoV-2 infection.MethodsGerman healthcare professionals underwent SARS-CoV-2 IgG antibody testing and completed self-rating questionnaires at baseline (...) and 21 months later between April 2020 and February 2022. Differences in variables between the time points were analyzed and a regression analysis was performed to predict somatic symptom deterioration at follow-up.ResultsSeven hundred fifty-one adults completed both assessments. Until follow-up, n = 58 had contracted SARS-CoV-2 confirmed by serology. Between baseline and follow-up, signs of mental and physical strain increased significantly in the sample. Symptom expectations associated with COVID-19 and a self-reported history of COVID-19, but not serologically confirmed SARS-CoV-2 infection, significantly predicted somatic symptom deterioration at follow-up. A further predictor was baseline psychological symptom burden.ConclusionsThis study supports a disease-overarching biopsychosocial model for the development of burdensome somatic symptoms during the COVID-19 pandemic and supports research findings that symptom burden may be more related to the psychosocial effects of the pandemic than to infection itself. Future studies on Long COVID should include SARS-CoV-2 negative control groups and consider symptom burden prior to infection in order to avoid an overestimation of prevalence rates. (shrink)

Introduction: Parkinson's Disease is characterized by motor and non-motor symptoms, among which deficits in social cognition might affect ~20% of patients. This study aims to evaluate the role of social cognitive abilities in the perceived impact of COVID-19 emergency, and the effects of lockdown measures on patients' social network and caregivers' burden.Methods: Fourteen PD patients performed a neuropsychological battery including sociocognitive tasks before the introduction of COVID-19 restrictive measures. A structured interview through an online platform was performed in (...) the last 2 weeks of the first lockdown phase to assess patients' health status, perception of COVID-19 emergency, changes in caregivers' burden, and patients' social isolation. Non-parametric analyses were performed to evaluate the association between social skills and patients' COVID-19 perception, as well as the effects of restrictive measures.Results: At baseline evaluation, half of the PD patients showed sociocognitive dysfunctions, mainly on mentalizing abilities. Patients with impaired social cognition skills showed a significantly lower concern on the possible effects of COVID-19 on their health. Caregiver burden and patients' social network remained stable during the lockdown.Conclusion: These preliminary results underline that PD sociocognitive dysfunctions might affect patients' abilities to estimate the effects of COVID-19 infection. However, the lack of a significant increase in caregivers' burden and social isolation suggests, in our sample, a good coping to COVID-19 emergency. Since COVID-19 pandemic can have direct and indirect severe consequences in patients with PD, the development of educational and preventive programs is recommended. (shrink)

Deep brain stimulation has been regarded as an efficient and safe treatment for Parkinson’s disease since being approved by the Food and Drug Administration in 1997. It is estimated that more than 150 000 patients have been implanted, with a forecasted rapid increase in uptake with population ageing. Recent longitudinal follow-up studies have reported a significant increase in postoperative survival rates of patients with PD implanted with DBS as compared with those not implanted with DBS. Although DBS tends to (...) increase life expectancy for most patients with PD, this medical benefit does not come without attendant negative consequences. For example, emerging forms of iatrogenic harms are sometimes induced—harms which were not initially expected when clinicians proposed neurosurgery and patients or their guardians consented to the treatment. We report and discuss the clinical case of a patient who was implanted with DBS more than 20 years ago and is now experiencing unexpected stages of PD. This case illustrates how extending the life span without improving quality of life may introduce a burden of harms for patients and families. As well, this case shows why we should prepare for the expanding numbers of PD-implanted patients experiencing a gain of longevity but with severe stages of disease leading to diminution in quality of life. This newly observed effect of DBS treatment requires us to explore ethical questions related to iatrogenic harms, informed consent, end of life and caregivers’ burden. (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)

BackgroundHealth-related quality of life is known to be impaired in individuals with coronary artery disease, especially in those after a recent acute coronary syndrome. Heart failure is a common burden in this population that significantly contributes to worsening HRQoL. To accurately measure the level of HRQoL in individuals with CAD after ACS, disease-specific scales, such as the Minnesota living with heart failure questionnaire, are recommended. Nevertheless, to date, there has not been a study that would comprehensively evaluate (...) the psychometric properties of the MLHFQ in a large sample of individuals with CAD after ACS. The debate regarding the internal structure of MLHFQ is also still present. Hence, this study aimed to translate the MLHFQ and evaluate its internal structure, reliability/precision, and validity in individuals with CAD following ACS in Lithuania.MethodsIn the cross-sectional study, 1,083 participants were evaluated for sociodemographic and clinical characteristics. HRQoL was measured using the MLHFQ and the Short Form-36 health survey. In addition, exercise capacity was also evaluated in the study patients, using a standardized computer-driven bicycle ergometer.ResultsThe internal consistency of the MLHFQ subscales was found to be good. Confirmatory factor analysis provided the support for the three-factor model of the MLHFQ and showed acceptable fit [comparative fit indices = 0.894; goodness-of-fit = 0.898; non-normal fit index = 0.879, and root mean square error of approximation = 0.073]. Regarding convergent evidence, significant associations were found between the MLHFQ domains and the SF-36 domains and EC.ConclusionThe current study completed cultural validation and provided further information on the psychometric characteristics of the MLHFQ in Lithuania, suggesting MLHFQ as a valid and reliable instrument to measure HRQoL. The Lithuanian version of MLHFQ is best described by a three-factor solution, measuring physical, social, and emotional dimensions of HRQoL among individuals with CAD following ACS. (shrink)

We present a one per cent measurement of the cosmic distance scale from the detections of the baryon acoustic oscillations in the clustering of galaxies from the Baryon Oscillation Spectroscopic Survey, which is part of the Sloan Digital Sky Survey III. Our results come from the Data Release 11 sample, containing nearly one million galaxies and covering approximately 8500 square degrees and the redshift range 0.2 < z < 0.7. We also compare these results with those from the publicly released (...) DR9 and DR10 samples. Assuming a concordance Λ cold dark matter cosmological model, the DR11 sample covers a volume of 13 Gpc3 and is the largest region of the Universe ever surveyed at this density. We measure the correlation function and power spectrum, including density-field reconstruction of the BAO feature. The acoustic features are detected at a significance of over 7σ in both the correlation function and power spectrum. Fitting for the position of the acoustic features measures the distance relative to the sound horizon at the drag epoch, rd, which has a value of rd,fid = 149.28 Mpc in our fiducial cosmology. We find DV = at z = 0.32 and DV = at z = 0.57. At 1.0 per cent, this latter measure is the most precise distance constraint ever obtained from a galaxy survey. Separating the clustering along and transverse to the line of sight yields measurements at z = 0.57 of DA = and H =. Our measurements of the distance scale are in good agreement with previous BAO measurements and with the predictions from cosmic microwave background data for a spatially flat CDM model with a cosmological constant. © 2014 The Author Published by Oxford University Press on behalf of the Royal Astronomical Society. (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)