While philosophical questions about health and disease have attracted much attention in recent decades, and while opinions are divided on most issues, influential accounts seem to embrace negativism about health, according to which health is the absence of disease. Some subscribe to unrestricted negativism, which claims that negativism applies not only to the concepts of health and disease as used by healthcare professionals but also to the lay concept that underpins everyday thinking. Whether people conceptualize health in (...) this manner has implications for medical care and public health, and so we set out to examine this claim in two studies. Participants were asked to assess and compare the health states of two people presented in two vignettes. We found that both lay people and medical students conceptualize health as something more than the absence of disease. We argue that our findings highlight a need to rethink unrestricted negativism and indicate a need to rethink the way the debate has traditionally focused on disease. (shrink)

Normativism holds that there is a close conceptual link between disease and disvalue. We challenge normativism by advancing an argument against a popular normativist theory, Jerome Wakefield’s harmful dysfunction account. Wakefield maintains that medical disorders are breakdowns in evolved mechanisms that cause significant harm to the organism. We argue that Wakefield’s account is not a promising way to distinguish between disease and health because being harmful is neither necessary nor sufficient for a dysfunction to be a disorder. Counterexamples (...) to the harmful dysfunction account are considered, such as mild infections, perceptual deficits, and beneficial illnesses. Then we consider two ways of amending the harmful dysfunction account to address these cases and argue that the proposed amendments raise even more serious problems for this account. These problems apply generally to any normativist theory and raise doubts about the entire normative approach to the philosophy of health and disease. (shrink)

The traditional contrast between naturalist and normativist disease concepts fails to capture the most salient features of the health concepts debate. By using health concepts as a window on background notions of medical science and ethics, I show how Christopher Boorse (an influential naturalist) and Lennart Nordenfelt (an influential normativist) actually share deep assumptions about the character of medicine. Their disease concepts attempt, in different ways, to shore up the same medical model. For both, health concepts function like (...) demarcation criteria in the philosophy of science: they mark off the jurisdiction of medical science, and protect it from an inappropriate intrusion of socioeconomic factors, which threaten the integrity of modern medicine. These views are challenged by new developments in healthcare such as managed care and total quality review. To frame the health concepts debate in a way that better captures the issues integral to these new developments, I advance a new way of reading the distinction between weak and strong normativists. Strong normativists are skeptical of the demarcation project, think facts and values cannot be disentangled, and hold that socioeconomic conditions unavoidably influence how pathology is understood. The new health concepts debate should be framed as one between weak and strong normativists, and it concerns how we should respond to the current developments in health care. (shrink)

Medical practice is ideally based on robust, relevant research. However, the lack of disease-modifying treatments for Alzheimer’s disease has motivated “innovative practice” to improve patients’ well-being despite insufficient evidence for the regular use of such interventions in health systems treating millions of patients. Innovative or new non-validated practice poses at least three distinct ethical questions: first, about the responsible application of new non-validated practice to individual patients ; second, about the way in which data from new non-validated practice (...) are communicated via the scientific and lay press ; and third, about the prospect of making new non-validated interventions widely available before more definitive testing. We argue that the authors of metabolic enhancement protocols for Alzheimer’s disease have overstated the evidence in favor of these interventions within the scientific and lay press, failing to communicate weaknesses in their data and uncertainty about their conclusions. Such unmeasured language may create false hope, cause financial harm, undermine informed consent, and frustrate the production of generalizable knowledge necessary to face the societal problems posed by this devastating disease. We therefore offer more stringent guidelines for responsible innovation in the treatment of Alzheimer’s disease. (shrink)

How can we draw the line between health and disease? This crucial question of demarcation has immense practical implications and has troubled scholars for ages. The question will be addressed in three steps. First, I will present an important contribution by Rogers and Walker who argue forcefully that no line can be drawn between health and disease. However, a closer analysis of their argument reveals that a line-drawing problem for disease-related features does not necessarily imply a line-drawing (...) problem for disease as such. The second step analyzes some alternative approaches to drawing the line between health and disease. While these approaches do not provide full answers to the question, they indicate that the line-drawing question should not be dismissed too hastily. The third step investigates whether the line-drawing problem can find its solution in the concept of suffering. In particular, I investigate whether returning to the origin of medicine, with the primary and ultimate goal of reducing suffering, may provide sources of demarcation between health and disease. In fact, the reason why we pay attention to particular phenomena as characteristics of disease, consider certain processes to be relevant, and specific functions are classified as dys-functions, is that they are related to suffering. Accordingly, using suffering as a criterion of demarcation between health and disease may hinder a wide range of challenges with modern medicine, such as unwarranted expansion of disease, overdiagnosis, overtreatment, and medicalization. (shrink)

Since the outbreak of coronavirus disease 2019 in China, people have been exposed to a flood of media news related to the pandemic every day. Studies have shown that media news about public crisis events have a significant impact on individuals' depression. However, how and when the duration of attention to pandemic news predicts depression still remains an open question. This study established a moderated mediating model to investigate the relationship between the duration of attention to pandemic news and (...) depression, the mediating effect of risk perception, and the moderating effect of future time perspective on the relationship. In early February 2020, 701 individuals from 29 provinces, autonomous regions, and municipalities across China were asked to self-report their duration of attention to pandemic news, level of depression, risk perception, and future time perspective during the COVID-19 outbreak. Results show that there is a significant positive correlation between the duration of attention to news on COVID-19 and depression; risk perception mediates the association between the duration of attention to pandemic news and depression; and future time perspective plays a moderating role between risk perception and depression. The findings of the present study provide theoretical implications and practically throw some light on alleviating the public's depression during pandemic periods. We highlight that the individual's hope for a better future, focusing on positive news, and time perspective balance during an epidemic disease are also beneficial to promoting positive emotion and reducing depression. (shrink)

It is a tale of two Pfizers. In 2018 they abandoned research into the leading cause of dementia, Alzheimer’s Disease (AD) (Hawkes 2018). In 2021, they developed the first vaccine for Covid-19 to re...

Stem cells are likely to be used as an alternate source of biological material for neural transplantation to treat Parkinson’s disease in the not too distant future. Among the several ethical criteria that must be fulfilled before proceeding with clinical research, a favourable benefit to risk ratio must be obtained. The potential benefits to the participant and to society are evaluated relative to the risks in an attempt to offer the participants a reasonable choice. Through examination of preclinical studies (...) transplanting stem cells in animals and the transplantation of fetal tissue in patients with Parkinson’s disease, a current set of potential benefits and risks for neural transplantation of stem cells in clinical research of Parkinson’s disease are derived. The potential benefits to research participants undergoing stem cell transplantation are relief of parkinsonian symptoms and decreasing doses of parkinsonian drugs. Transplantation of stem cells as a treatment for Parkinson’s disease may benefit society by providing knowledge that can be used to help determine better treatments in the future. The risks to research participants undergoing stem cell transplantation include tumour formation, inappropriate stem cell migration, immune rejection of transplanted stem cells, haemorrhage during neurosurgery and postoperative infection. Although some of these risks are general to neurosurgical transplantation and may not be reduced for participants, the potential risk of tumour formation and inappropriate stem cell migration must be minimised before obtaining a favourable potential benefit to risk calculus and to provide participants with a reasonable choice before they enrol in clinical studies. (shrink)

An increasing number of older patients have to decide on a treatment plan for advanced chronic kidney disease, involving dialysis or conservative care. Shared decision-making is recommended as the model for decision-making in such preference-sensitive decisions. The aim of SDM is to come to decisions that are consistent with the patient’s values and preferences and made by the patient and healthcare professional working together. In clinical practice, however, SDM appears to be not yet routine and needs further implementation. A (...) shift from a biomedical to a person-centered conception might help to make the process more shared. Shared should, therefore, be interpreted as two persons bringing two perspectives to the table, that both need to be explored during the decision-making process. Starting from the patient’s perspective will enable to determine the mutual goals of care first and, subsequently, determine the best way for achieving those goals. To perform such SDM, the healthcare professional needs to become a skilled companion, being part of the patient’s relational context, and start asking the right questions about what matters to the patient as person. In this article, we describe the need for a person-centered conception of SDM for the setting of older patients with advanced CKD. (shrink)

Background: Prenatal and postnatal mental disorders can exert severe adverse influences on mothers, fetuses, and children. However, the effect of the coronavirus disease 2019 pandemic on the mental health of pregnant and postpartum women remains unclear.Methods: Relevant studies that were published from January 1, 2019 to September 19, 2020 were identified through the systematic search of the PubMed, EMBASE, and Web of Science databases. Quality assessment of included studies, random-effects meta-analysis, sensitivity analysis, and planned subgroup analysis were performed.Results: A (...) total of 23 studies conducted with 20,569 participants during the COVID-19 pandemic and with 3,677 pregnant women before the COVID-19 pandemic were included. The prevalence rates of anxiety, depression, psychological distress, and insomnia among pregnant women during the COVID-19 pandemic were 37%, 31%, 70%, and 49%, respectively. The prevalence of postpartum depression was 22%. Multigravida women and women in the first and third trimesters of pregnancy were more vulnerable than other pregnant women. The assessment of the associations between the COVID-19 pandemic and mental health problems revealed that the pooled relative risks of anxiety and depression in pregnant women were 1.65 and 1.08, respectively.Conclusions: The prevalence rates of mental disorders among pregnant and postpartum women during the COVID-19 pandemic were high. Timely and tailored interventions should be applied to mitigate mental problems among this population of women, especially multigravida women and women in the first and third trimesters of pregnancy. (shrink)

A defining characteristic of Alzheimer’s disease is difficulty in retrieving semantic memories, or memories encoding facts and knowledge. While it has been suggested that this impairment is caused by a degradation of the semantic store, the precise ways in which the semantic store is degraded are not well understood. Using a longitudinal corpus of semantic fluency data, we derive semantic network representations of patients with Alzheimer’s disease and of healthy controls. We contrast our network-based approach with analyzing fluency (...) data with the standard method of counting the total number of items and perseverations in fluency data. We find that the networks of Alzheimer’s patients are more connected and that those connections are more randomly distributed than the connections in networks of healthy individuals. These results suggest that the semantic memory impairment of Alzheimer’s patients can be modeled through the inclusion of spurious associations between unrelated concepts in the semantic store. We also find that information from our network analysis of fluency data improves prediction of patient diagnosis compared to traditional measures of the semantic fluency task. (shrink)

Given the past two decades of over 40 failed trials of amyloid-lowering therapies in Alzheimer’s Disease (AD), many of which succeeded in lowering amyloid as designed, we present an ethical argument for emptying the drug pipeline of tests of amyloid-lowering agents so as to end the historical dominance of the amyloid-reducing therapeutic approach in AD.

Rare Disease research has seen tremendous advancements over the last decades, with the development of new technologies, various global collaborative efforts and improved data sharing. To maximize the impact of and to further build on these developments, there is a need for model consent clauses for rare diseases research, in order to improve data interoperability, to meet the informational needs of participants, and to ensure proper ethical and legal use of data sources and participants’ overall protection. A global Task (...) Force was set up to develop model consent clauses specific to rare diseases research, that are comprehensive, harmonized, readily accessible, and internationally applicable, facilitating the recruitment and consent of rare disease research participants around the world. Existing consent forms and notices of consent were analyzed and classified under different consent themes, which were used as background to develop the model consent clauses. The IRDiRC-GA4GH MCC Task Force met in September 2018, to discuss and design model consent clauses. Based on analyzed consent forms, they listed generic core elements and designed the following rare disease research specific core elements; Rare Disease Research Introductory Clause, Familial Participation, Audio/Visual Imaging, Collecting, storing, sharing of rare disease data, Recontact for matching, Data Linkage, Return of Results to Family Members, Incapacity/Death, and Benefits. The model consent clauses presented in this article have been drafted to highlight consent elements that bear in mind the trends in rare disease research, while providing a tool to help foster harmonization and collaborative efforts. (shrink)

Ontologies, as the term is used in informatics, are structured vocabularies comprised of human- and computer-interpretable terms and relations that represent entities and relationships. Within informatics fields, ontologies play an important role in knowledge and data standardization, representation, integra- tion, sharing and analysis. They have also become a foundation of artificial intelligence (AI) research. In what follows, we outline the Coronavirus Infectious Disease Ontology (CIDO), which covers multiple areas in the domain of coronavirus diseases, including etiology, transmission, epidemiology, pathogenesis, (...) diagnosis, prevention, and treatment. We emphasize CIDO development relevant to COVID-19. (shrink)

People struggling with addiction are neither powerless over their addiction, nor are they fully in control. Lewis vigorously objects to the brain disease model of addiction, because it makes people lose belief in their self-efficacy, and hence hinders their recovery. Although he acknowledges that there is a compulsive state in addiction, he objects to the claim that this compulsion is carved in stone. Lewis argues that the BDMA underestimates the agency of addicted people, and hence hinder their recovery. Lewis’s (...) work offers us a very much to be welcomed neurobiology of recovery. It offers addicted people a hopeful and respectful narrative for their recovery that treats them as agents rather than as damaged brains. However, I argue that overestimating people’s agency can also result in people losing belief in their self-efficacy. Lewis’s strong focus on the agency of addicted people might not match their experiences of struggle, hence reinforcing their feelings of guilt when they fail to control their use. I propose to replace the notion of addiction as a disease with a notion of a disease-like stage in addiction. I call this stage the duress stage in addiction, in which the addictive behaviour is largely impervious to the agent’s values and to available techniques of self-control. However, the agent can overcome this stage by developing new techniques of self-control, by building on their self-concept and belief in self-efficacy, by changing their environments and habits, and by engaging in projects that are meaningful to the agent. (shrink)

The history of the research on peptic ulcer disease is characterized by a premature abandonment of the bacterial hypothesis, which subsequently had its comeback, leading to the discovery of Helicobacter pylori—the major cause of the disease. In this paper we examine the received view on this case, according to which the primary reason for the abandonment of the bacterial hypothesis in the mid-twentieth century was a large-scale study by a prominent gastroenterologist Palmer, which suggested no bacteria could be (...) found in the human stomach. To this end, we employ the method of digital textual analysis and study the literature on the etiology of PUD published in the decade prior to Palmer’s article. Our findings suggest that the bacterial hypothesis had already been abandoned before the publication of Palmer’s paper, which challenges the widely held view that his study played a crucial role in the development of this episode. In view of this result, we argue that the PUD case does not illustrate harmful effects of a high degree of information flow, as it has frequently been claimed in the literature on network epistemology. Moreover, we argue that alternative examples of harmful effects of a high degree of information flow may be hard to find in the history of science. (shrink)

We have begun work on two separate but related ontologies for the study of neurological diseases. The first, the Neurological Disease Ontology (ND), is intended to provide a set of controlled, logically connected classes to describe the range of neurological diseases and their associated signs and symptoms, assessments, diagnoses, and interventions that are encountered in the course of clinical practice. ND is built as an extension of the Ontology for General Medical Sciences — a high-level candidate OBO Foundry ontology (...) that provides a set of general classes that can be used to describe general aspects of medical science. ND is being built with classes utilizing both textual and axiomatized definitions that describe and formalize the relations between instances of other classes within the ontology itself as well as to external ontologies such as the Gene Ontology, Cell Ontology, Protein Ontology, and Chemical Entities of Biological Interest. In addition, references to similar or associated terms in external ontologies, vocabularies and terminologies are included when possible. Initial work on ND is focused on the areas of Alzheimer’s and other diseases associated with dementia, multiple sclerosis, and stroke and cerebrovascular disease. Extensions to additional groups of neurological diseases are planned. The second ontology, the Neuro-Psychological Testing Ontology (NPT), is intended to provide a set of classes for the annotation of neuropsychological testing data. The intention of this ontology is to allow for the integration of results from a variety of neuropsychological tests that assay similar measures of cognitive functioning. Neuro-psychological testing is an important component in developing the clinical picture used in the diagnosis of patients with a range of neurological diseases, such as Alzheimer’s disease and multiple sclerosis, and following stroke or traumatic brain injury. NPT is being developed as an extension to the Ontology for Biomedical Investigations. (shrink)

AimWe aim to explore the impact of occupational stress on the quality of life of nurses in infectious disease departments and to explore the mediating role of psychological resilience on this impact.BackgroundSudden public health events and the prevalence of infectious diseases give nurses in infectious disease departments a heavy task load and high occupational stress, which can affect their quality of life, and which is closely related to the quality of clinical care they provide. There are few existing (...) studies on occupational stress, psychological resilience, and the quality of life of nurses in infectious disease departments.MethodsWe collected data from infectious-disease-specialized hospitals or infectious disease departments of general hospitals in China. In total 1,536 nurses completed questionnaires: the Effort-Reward Imbalance Questionnaire, the Connor-Davidson Resilience Scale, and the World Health Organization Quality of Life Brief Scale. We use a structural equation model to test the mediating role of the psychological resilience in the relationship between occupational stress and quality of life.ResultsAmong 1,536 participants, 88.2% experienced an effort-reward imbalance. The average scores for psychological resilience and quality of life were 56.06 and 51.80, respectively. Our results show that occupational stress is negatively correlated with psychological resilience and quality of life. In addition, we find that psychological resilience is positively correlated with quality of life and that the indirect effect of occupational stress on quality of life through psychological resilience is significant, indicating at least a partial mediating role of psychological resilience.ConclusionA high proportion of nurses in infectious disease departments felt that their jobs’ effort-reward imbalance was high. These nurses’ scores for psychological resilience were in the middle level among Chinese people generally, but their quality of life was lower than the Chinese norm. We conclude that occupational stress has an important impact on their quality of life, and psychological resilience plays a partial mediating role on this impact.Implications for Nursing ManagementHospital managers can benefit from paying attention to the occupational stress of nurses and helping to improve the quality of life of nurses by alleviating this occupational stress and improving psychological resilience. (shrink)

Despite recent increasing support for the brain disease model of alcohol and drug addiction, the extent to which the model may clinically impact addiction treatment and client behaviour remains unclear. This qualitative study explored the views of community-based clinicians in Australia and examined: whether Australian community-based clinicians support the BDM of addiction; their attitudes on the impact the model may have on clinical treatment; and their views on how framing addiction as a brain disease may impact addicted clients’ (...) behaviour. Six Australian community-based clinicians participated in semi-structured in-depth interviews that were analysed using thematic analysis. Whilst the BDM was not fully supported by this purposive sample of Australian community-based clinicians, there was acceptance that addiction neuroscience formed a key part of a wider addiction framework. Participants believed the BDM ignored key social, psychological and environmental factors important for successful treatment. The BDM was seen as potentially irrelevant for certain client types, however the model was believed to integrate with particular therapies. Participants believed that for clients viewing their addiction in terms of a brain disease, there were potential positive and negative impacts on client behaviour. Implications for addiction treatment practice and public health policy are discussed. (shrink)

Background Outbreaks of infectious disease cause serious and costly health and social problems. Two new technologies – pathogen whole genome sequencing and Big Data analytics – promise to improve our capacity to detect and control outbreaks earlier, saving lives and resources. However, routinely using these technologies to capture more detailed and specific personal information could be perceived as intrusive and a threat to privacy. Method Four community juries were convened in two demographically different Sydney municipalities and two regional cities (...) in New South Wales, Australia to elicit the views of well-informed community members on the acceptability and legitimacy of: making pathogen WGS and linked administrative data available for public health researchusing this information in concert with data linkage and machine learning to enhance communicable disease surveillance systems Fifty participants of diverse backgrounds, mixed genders and ages were recruited by random-digit-dialling and topic-blinded social-media advertising. Each jury was presented with balanced factual evidence supporting different expert perspectives on the potential benefits and costs of technologically enhanced public health research and communicable disease surveillance and given the opportunity to question experts. Results Almost all jurors supported data linkage and WGS on routinely collected patient isolates for the purposes of public health research, provided standard de-identification practices were applied. However, allowing this information to be operationalised as a syndromic surveillance system was highly contentious with three juries voting in favour, and one against by narrow margins. For those in favour, support depended on several conditions related to system oversight and security being met. Those against were concerned about loss of privacy and did not trust Australian governments to run secure and effective systems. Conclusions Participants across all four events strongly supported the introduction of data linkage and pathogenomics to public health research under current research governance structures. Combining pathogen WGS with event-based data surveillance systems, however, is likely to be controversial because of a lack of public trust, even when the potential public health benefits are clear. Any suggestion of private sector involvement or commercialisation of WGS or surveillance data was unanimously rejected. (shrink)

Techniques for resolving some types of inherited mitochondrial diseases have recently been the subject of scientific research, ethical scrutiny, media coverage and regulatory initiatives in the UK. Building on research using eggs from a variety of providers, scientists hope to eradicate maternally transmitted mutations in mitochondrial DNA by transferring the nuclear DNA of a fertilised egg, created by an intending mother at risk of transmitting mitochondrial disease, and her male partner, into an enucleated egg provided by another woman. In (...) this article we examine how egg providers for mitochondrial research and therapy have been represented in stakeholder debates. A systematic review of key documents and parliamentary debates shows that the balance of consideration tilts heavily towards therapeutic egg providers; research egg providers have been ignored and rendered invisible. However, mapping the various designations of therapeutic egg providers shows that their role is so heavily camouflaged that they have only an absent presence in discussions. We explore this puzzling ambivalence towards egg providers whose contributions are necessary to the success of current mitochondrial research and proposed therapies. We suggest that labels that diminish the contributions of egg providers serve certain governance objectives in managing possible future claims about, and by, therapeutic egg providers. We demonstrate that the social positioning of research egg providers is entangled within that of therapeutic egg providers which means that the former can also never receive their due recognition. This article contributes to the wider literature on the governance of new technological interventions. (shrink)

One current challenge for neuropsychologists is to design assessment methods capable of detecting cognitive deficits in the early or preclinical phases of Alzheimer’s disease (AD). The objective of this paper is to review the studies that have explored the use of the Face-Name Associative Memory Exam (FNAME) as a test for early diagnosis of AD. Studies looking at correlations between performance on the FNAME test and biomarkers in healthy people and studies comparing healthy controls and people with mild cognitive (...) impairment are reviewed. These studies are based on the evidence that AD’s pathological process begins years before the most visible clinical manifestations. We conclude that the FNAME test may be a valuable tool for early diagnosis but that some important questions remain to be resolved in future research. (shrink)

This paper recognizes the complexity of the debate on informed consent and discusses the importance of the ongoing process of consent for people affected by Huntington's disease (HD). Although written information may not be the most appropriate form of obtaining informed consent in qualitative research, it remains an important part of the ethical approval process for health research in the UK. This paper draws on a study in which the information sheet and consent form were specifically designed to help (...) obtain consent from people who may be impaired by the cognitive and physical effects of HD. The forms were developed by drawing on expert opinion and relevant literature and fall in line with recommendations from the Mental Capacity Act 2005 to encourage people to make their own decisions. The paper describes the feasibility of a method for obtaining consent as an ongoing process with patients affected by HD using information sheets and consent forms specifically designed for people with potential cognitive and/or physical impairments. In conclusion, this paper adds a pragmatic approach to the debate on informed consent by describing the development of a written information sheet and consent form being used in a current social research study. Particular emphasis is placed on the importance of written information being adapted according to the needs of potential participants. (shrink)

We investigated family members’ lived experience of Parkinson’s disease aiming to investigate opportunities for well-being. A lifeworld-led approach to healthcare was adopted. Interpretative phenomenological analysis was used to explore in-depth interviews with people living with PD and their partners. The analysis generated four themes: It’s more than just an illness revealed the existential challenge of diagnosis; Like a bird with a broken wing emphasizing the need to adapt to increasing immobility through embodied agency; Being together with PD exploring the (...) kinship within couples and belonging experienced through support groups; and Carpe diem! illuminated the significance of time and fractured future orientation created by diagnosis. Findings were interpreted using an existential-phenomenological theory of well-being. We highlighted how partners shared the impact of PD in their own ontological challenges. Further research with different types of families and in different situations is required to identify services required to facilitate the process of learning to live with PD. Care and support for the family unit needs to provide emotional support to manage threats to identity and agency alongside problem-solving for bodily changes. Adopting a lifeworld-led healthcare approach would increase opportunities for well-being within the PD illness journey. (shrink)

A repository of clinically associated Staphylococcus aureus (Sa) isolates is used to semi‐automatically generate a set of application ontologies for specific subfamilies of Sa‐related disease. Each such application ontology is compatible with the Infectious Disease Ontology (IDO) and uses resources from the Open Biomedical Ontology (OBO) Foundry. The set of application ontologies forms a lattice structure beneath the IDO‐Core and IDO‐extension reference ontologies. We show how this lattice can be used to define a strategy for the construction of (...) a new taxonomy of infectious disease incorporating genetic, molecular, and clinical data. We also outline how faceted browsing and query of annotated data is supported using a lattice application ontology. (shrink)

This study examines how low-income African American mothers of children with sickle cell disease cope with the reproductive implications of having passed a genetic disease on to their children. Based on in-depth interviews with 29 African American mothers, I found that most mothers knew about SCD prior to having a child with the disease; many knew they were carriers of the sickle cell trait. In explaining why this knowledge did not lead them to alter their reproductive behaviors, (...) mothers invoked a theme of medical mismanagement; that is, they said the genetic screening programs for SCD did not provide them with enough medical knowledge about the disease. The implication that adequate knowledge about SCD would have affected their childbearing choices, however, is contradicted by their subsequent reproductive behaviors. I argue that the SCD diagnosis threatened motherhood, an important cultural value among low-income African American women, and that they protected their reproductive autonomy by obfuscating SCD medical knowledge. (shrink)

In this article, we argue that contemporary biomedicine is shaped by two, seemingly incommensurable, organizational logics, the ‘regime of truth’ and the ‘regime of hope’. We articulate their features by drawing on debates sparked by the recent clinical trial of a new approach to the treatment of Parkinson’s Disease. We also argue that the ‘self’ is configured in the very same process whereby these two organizational logics interlock and become mutually dependent, so that the ‘self’ might be said to (...) be the effect of a ‘parasitic’ relationship between the regimes of ‘truth’ and ‘hope’. We then bring these two arguments to bear on the contrasting views of the relationship between embodiment and political subjectivity articulated by Michel Foucault and Giorgio Agamben, on the one hand, and Paul Rabinow and Nikolas Rose, on the other hand. (shrink)

Implanted medical devices—for example, cardiac defibrillators, deep brain stimulators, and insulin pumps—offer users the possibility of regaining some control over an increasingly unruly body, the opportunity to become part “cyborg” in service of addressing pressing health needs. We recognize the value and effectiveness of such devices, but call attention to what may be less clear to potential users—that their vulnerabilities may not entirely disappear but instead shift. We explore the kinds of shifting vulnerabilities experienced by people with Parkinson’s disease (...) (PD) who receive therapeutic deep brain stimulators to help control their tremors and other symptoms of PD. (shrink)

Healthcare workers carry a substantial risk of harm from infectious disease, particularly, but not exclusively, during outbreaks. More can be done by healthcare institutions to identify risks, quantify the current burden of preventable infectious disease amongst HCWs and identify opportunities for prevention. We suggest that institutional obligations should be clarified with respect to the mitigation of infectious disease risks to staff, and question the duty of HCWs to care while healthcare institutions persist with a reactive rather than (...) proactive attitude to infectious disease threats. (shrink)

The relationship between law and a population’s health is complex and poorly understood. To the extent that scholarship exists on the subject, it has usually focused on epidemics that are concentrated in relatively vulnerable, marginalized communities. Often, individual behaviors are assumed to play a major role in the epidemiology of these diseases. Perhaps, as a result, these illnesses become stigmatized and the object of coercive laws, which in turn become the subject of litigation, legal debate, and ultimately scholarly analysis. Thus, (...) to the extent that U.S. legal scholars have thought about public health in the last 30 years, they have generally done so in the context of tuberculosis, intravenous drug abuse, and a handful of similar conditions. Likewise, Jonathan Mann’s own appreciation of the importance of human rights to public health emerged in the wake of his work with HIV, which is perhaps the prototypical stigmatized disease. (shrink)

It is argued that there is no agreed definition of disease. Purely biological definitions are inadequate and combined biological and social definitions are not yet satisfactory. One approach has been to say that what doctors treat is disease. We are uncomfortable with that because we feel it releases people from obligations on a basis of convenience. In practice the weight given to the idea of disease varies according to what it will imply about obligations and privileges. It (...) is suggested that what doctors treat can be accepted as disease provided that we recognize that the significance of disease must vary with circumstances. Those circumstances include the agreement, more or less, of all persons affected when someone is considered to be a patient. The individual must also be competent and not constrained except by his own biological or psychological characteristics. Keywords: disease, patient-physician relationship, obligation CiteULike Connotea Del.icio.us What's this? (shrink)

This article compares health promotion attitudes towards prostate cancer and Alzheimer’s disease. Our aim is to demonstrate that these two apparently distinct conditions of the aging body – one affecting the male reproductive system, the other primarily the brain – are addressed in similar fashion in recent public health activities because of a growing emphasis on a ‘cardiovascular logic’. We suggest that this is a form of reductionism, and argue that it leaves us with a dangerous paradox: while re-transcending, (...) at least partially, the conceptual separation of body and brain, it clouds much-needed discussion and research, such as contingent issues of socio-economic and socio-cultural disease disparities. (shrink)

For nearly a century, and until very recently, the majority of U.S. states required a blood test for marriage license applicants. The tests identified people with conditions formerly designated as "venereal diseases," most importantly gonorrhea and syphilis. Those who tested positive were barred from civil marriage. Although the premarital testing requirement is no longer a feature of state law, numerous related enactments are common features of law in most states.The historical literature describing the rise and fall of laws prescribing marriage (...) restrictions related to VD has treated those enactments as public health measures, meant primarily to forestall the spread of disease to intimate partners. But laws to... (shrink)

Deep brain stimulation (DBS) as investigational intervention for symptomatic relief from Alzheimer disease (AD) has generated big expectations. Our aim is to discuss the ethical justification of this research agenda by examining the underlying research rationale as well as potential methodological pitfalls. The shortcomings we address are of high ethical importance because only scientifically valid research has the potential to be ethical. We performed a systematic search on MEDLINE and EMBASE. We included 166 publications about DBS for AD into (...) the analysis of research rationale, risks and ethical aspects. Fifty-eight patients were reported in peer-reviewed journals with very mixed results. A grey literature search revealed hints for 75 yet to be published, potentially enrolled patients. The results of our systematic review indicate methodological shortcomings in the literature that are both scientific and ethical in nature. According to our analysis, research with human subjects was performed before decisive preclinical research was published examining the specific research question at stake. We also raise the concern that conclusions on the potential safety and efficacy have been reported in the literature that seem premature given the design of the feasibility studies from which they were drawn. In addition, some publications report that DBS for AD was performed without written informed consent from some patients, but from surrogates only. Furthermore, registered ongoing trials plan to enroll severely demented patients. We provide reasons that this would violate Art. 28 of the Declaration of Helsinki, because DBS for AD involves more than minimal risks and burdens, and because its efficacy and safety are not yet empirically established to be likely. Based on our empirical analysis, we argue that clinical research on interventions of risk class III (Food and Drug Administration and European Medicines Agency) should not be exploratory but grounded on sound, preclinically tested, and disease-specific a posteriori hypotheses. This also applies to DBS for dementia as long as therapeutic benefits are uncertain, and especially when research subjects with cognitive deficits are involved, who may foreseeably progress to full incapacity to provide informed consent during the required follow-up period. (shrink)

While public health organizations can detect disease spread, few can monitor and respond to real-time misinformation. Misinformation risks the public’s health, the credibility of institutions, and the safety of experts and front-line workers. Big Data, and specifically publicly available media data, can play a significant role in understanding and responding to misinformation. The Public Good Projects uses supervised machine learning to aggregate and code millions of conversations relating to vaccines and the COVID-19 pandemic broadly, in real-time. Public health researchers (...) supervise this process daily, and provide insights to practitioners across a range of disciplines. Through this work, we have gleaned three lessons to address misinformation. Sources of vaccine misinformation are known; there is a need to operationalize learnings and engage the pro-vaccination majority in debunking vaccine-related misinformation. Existing systems can identify and track threats against health experts and institutions, which have been subject to unprecedented harassment. This supports their safety and helps prevent the further erosion of trust in public institutions. Responses to misinformation should draw from cross-sector crisis management best practices and address coordination gaps. Real-time monitoring and addressing misinformation should be a core function of public health, and public health should be a core use case for data scientists developing monitoring tools. The tools to accomplish these tasks are available; it remains up to us to prioritize them. (shrink)

Prediction markets, which trade contracts based on the results of predictions, have been remarkably successful in predicting the results of political events. A number of proposals have been made to extend prediction markets to scientific questions, and some small-scale science prediction markets have been implemented. Advocates for science prediction markets argue that they could alleviate problems in science such as bias in peer review and epistemically unjustified consensus. I argue that bias in peer review and epistemically unjustified consensuses are genuine (...) problems in science, and that current attempts to solve them fail in practical circumstances. Prediction markets do show some promise for answering scientific questions while avoiding the pitfalls of consensus and peer review. However, there are strong reasons to believe that science prediction markets will not perform nearly so well as election prediction markets, and implementing prediction markets on a large scale could have significant unintended consequences for the organization of scientific research. The promise of prediction markets to solve current problems in assessing scientific claims is therefore largely illusory. (shrink)

There has been some research conducted regarding nurses’ career success aimed at exploring its influencing factors, but there is no research on the mechanism of self-identity on the career success of infection control nurses. In order to further explore the formation mechanism of career success of nurses, we conducted our study using the Kaleidoscope Career Model to explore the chain-mediating effects of cognitive emotion regulation and social support between self-identity and career success. Five hundred forty-seven infection control nurses from nine (...) different hospitals participated in the study and completed questionnaires on the self-identity, cognitive emotion regulation, social support, and career success scales. The results from structural equation modeling reveal that self-identity has a positive effect on positive emotion regulation and social support and a negative impact on negative emotion regulation. Positive emotion regulation has a positive effect on social support. All antecedents have a positive impact on career success except negative emotion regulation, which has a negative one. Bootstrap analysis shows that the relationship between self-identity and career success is partially mediated by the chain of cognitive emotion regulation and social support. Overall, our research sheds light on the mechanism of self-identity on career success of nurses. Theoretical and practical implications are discussed. (shrink)

Causation is important when considering how an organism maintains health, why disease arises in a healthy person, and how one may intervene to change the course of a disease. This paper explores the form of causative relationships in health, disease and intervention, with particular regard to the pathological and biopsychosocial models. Consistent with the philosophical view of dispositionalism, we believe that objects are the fundamental relata of causation. By accepting the broad scope of the biopsychosocial model, we (...) argue that psychological and social constructs be considered objects. We think that this 'biopsychosocial dispositionalism' offers the flexibility required to describe causation throughout health, disease and intervention pathways. When constructing mechanistic chains to describe causative pathways, we argue that an object will causally connect with others through actions; transfers of energy from one object to another, initiated by the manifestation of one or more dispositional property. Finally, our analysis of causative interactions utilises the concept that a common form of interaction exists between disease and intervention pathways. This common form will always be an object, but the mode of interaction will vary with each disease. We describe how intervention may act through objects being shared between converging mechanistic chains, or through the removal and/or insertion of objects in such chains. We believe that this analysis provides novel insight to the forms of causative transactions that can occur. In addition, we hope that the findings of this analysis represent the first step towards developing a framework for appraising the composition of mechanistic theories. (shrink)

Biomedicine is typically defined as the branch of medicine that is based on the principles of biology and biochemistry. A central tenet for biomedicine is the notion of disease and therapeutic specificity, i.e. the idea of tailored treatments for discrete disorders underpinned by specific pathologies. The present paper is concerned with how notions of disease and therapeutic specificity guide biomedical reasoning. To that end, the author proposes a model – the specificity triad – that draws on late philosopher (...) and physician Ludwik Fleck’s concept of “style of thought” to offer a frame for investigating the intricate process through which links between disorders, mechanisms, and therapeutics are established by biomedicine. Next by applying the specificity triad model to scrutinize research efforts in two discrete areas of medicine—psychiatry and regenerative medicine—this paper seeks to stimulate pertinent discussions in and about biomedicine. These include discussions on the ambiguous epistemic status of psychiatry within contemporary biomedicine, as well as the relationship between developmental biology — historically relatively disjointed from biomedical enterprise — and the burgeoning field of regenerative medicine. (shrink)

Increased amyloid beta (Aβ) production by sequential cleavage of the amyloid precursor protein (APP) by the β‐ and γ‐secretases contributes to the etiological basis of Alzheimer's disease (AD). This process requires APP and the secretases to be in the same subcellular compartments, such as the endosomes. Since all membrane organelles in the endomembrane system are kinetically and functionally linked, any defects in the trafficking and sorting machinery would be expected to change the functional properties of the whole system. The (...) Golgi is a primary organelle for protein trafficking, sorting and modifications, and Golgi defects have been reported in AD. Here we hypothesize that Golgi fragmentation in AD accelerates APP trafficking and Aβ production. Furthermore, Golgi defects may perturb the proper trafficking and processing of many essential neuronal proteins, resulting in compromised neuronal function. Therefore, molecular tools that can restore Golgi structure and function could prove useful as potential drugs for AD treatment. (shrink)