Results for 'Peptic Ulcer Disease'

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  1.  24
    Rethinking the history of peptic ulcer disease and its relevance for network epistemology.Bartosz Michał Radomski, Dunja Šešelja & Kim Naumann - 2021 - History and Philosophy of the Life Sciences 43 (4):1-23.
    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 (...)
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  2.  42
    Rethinking the History of Peptic Ulcer Disease and its Relevance for Network Epistemology.Bartosz Radomski, Dunja Šešelja & Naumann Kim - forthcoming - History and Philosophy of the Life Sciences.
    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 (...)
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  3.  17
    Heuristic Reevaluation of the Bacterial Hypothesis of Peptic Ulcer Disease in the 1950s.Dunja Šešelja & Christian Straßer - 2014 - Acta Biotheoretica 62 (4):429-454.
    Throughout the first half of the twentieth century the research on peptic ulcer disease focused on two rivaling hypothesis: the “acidity” and the “bacterial” one. According to the received view, the latter was dismissed during the 1950s only to be revived with Warren’s and Marshall’s discovery of Helicobacter pylori in the 1980s. In this paper we investigate why the bacterial hypothesis was largely abandoned in the 1950s, and whether there were good epistemic reasons for its dismissal. Of (...)
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  4.  55
    How Scientists Explain Disease.Paul Thagard - 1999 - Princeton University Press.
    "This is a wonderful book! In "How Scientists Explain Disease," Paul Thagard offers us a delightful essay combining science, its history, philosophy, and sociology.
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  5.  12
    Medical Fact and Ulcer Disease: A Study in Scientific Controversy Resolution.Mark Cherry - 2002 - History and Philosophy of the Life Sciences 24 (2):249 - 273.
    This study seeks to advance the understanding of controversy resolution in science. I take as a case study conceptualization and treatment of ulcer disease. Analysis of causal accounts and effective treatments illustrate the ways in which competing parallel research programs in medicine embody opposing social, political, and economic forces which are bound to the epistemological dimensions of scientific controversy (e.g., standards of evidence, reference, and inference), and which in turn shift perception of the burden of proof. The analysis (...)
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  6.  41
    Human dignity and rights beyond death.Kam Lun Hon - 2013 - Journal of Medical Ethics 39 (10):651-651.
    The corpse of a high-ranking male official was unearthed in the 1975, and important archaeologic discoveries were claimed. The exact year of his funeral was 167 BC. Autopsy revealed that the man had peptic ulcer disease. His naked body exposing genitalia and post-dissection stitches, with the dissected-out intestines and brain lying alongside, is now exhibited in a formalin-impregnated viewing glass tank in a museum .Meanwhile a 2000-year-old clothed female corpse is on display in another museum. In 1971, (...)
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  7. In Defense of Wishful Thinking: James, Quine, Emotions, and the Web of Belief.Alexander Klein - 2017 - In Sarin Marchetti & Maria Baghramian (eds.), Pragmatism and the European Traditions: Encounters with Analytic Philosophy and Phenomenology Before the Great Divide. London and New York: Routledge. pp. 228-250.
    What is W. V. O. Quine’s relationship to classical pragmatism? Although he resists the comparison to William James in particular, commentators have seen an affinity between his “web of belief” model of theory confirmation and James’s claim that our beliefs form a “stock” that faces new experience as a corporate body. I argue that the similarity is only superficial. James thinks our web of beliefs should be responsive not just to perceptual but also to emotional experiences in some cases; Quine (...)
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  8.  47
    Interaction between theory and practice in the surgical treatment of ulcer disease in the period of 1880–1920.Daniel Andersen - 1991 - Synthese 89 (1):63 - 73.
    Newly developed techniques for anaesthesia and asepsis made it possible for surgeons to attempt operative attacks on diseases which had been previously incurable. The period around the turn of the century is sometimes portrayed as one of very active development of new surgical methods. This activity has been seen as a result of fertile scientific thinking. It is demonstrated in the paper that it was in fact a barren period with a prolonged adherence to an anatomical concept as the basis (...)
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  9.  87
    Ulcers and bacteria I: discovery and acceptance.Paul Thagard - 1998 - Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences 29 (1):107-136.
    In 1983, Dr. J. Robin Warren and Dr. Barry Marshall reported finding a new kind of bacteria in the stomachs of people with gastritis. Warren and Marshall were soon led to the hypothesis that peptic ulcers are generally caused, not by excess acidity or stress, but by a bacterial infection. Initially, this hypothesis was viewed as preposterous, and it is still somewhat controversial. In 1994, however, a U. S. National Institutes of Health Consensus Development Panel concluded that infection appears (...)
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  10. How causal are microbiomes? A comparison with the H elicobacter pylori explanation of ulcers.Kate E. Lynch, Emily C. Parke & Maureen A. O’Malley - 2019 - Biology and Philosophy 34 (6):62.
    Human microbiome research makes causal connections between entire microbial communities and a wide array of traits that range from physiological diseases to psychological states. To evaluate these causal claims, we first examine a well-known single-microbe causal explanation: of Helicobacter pylori causing ulcers. This apparently straightforward causal explanation is not so simple, however. It does not achieve a key explanatory standard in microbiology, of Koch’s postulates, which rely on manipulations of single-microorganism cultures to infer causal relationships to disease. When Koch’s (...)
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  11.  49
    How causal are microbiomes? A comparison with the Helicobacter pylori explanation of ulcers.Kate E. Lynch, Emily C. Parke & Maureen A. O’Malley - 2019 - Biology and Philosophy 34 (6):62.
    Human microbiome research makes causal connections between entire microbial communities and a wide array of traits that range from physiological diseases to psychological states. To evaluate these causal claims, we first examine a well-known single-microbe causal explanation: of Helicobacter pylori causing ulcers. This apparently straightforward causal explanation is not so simple, however. It does not achieve a key explanatory standard in microbiology, of Koch’s postulates, which rely on manipulations of single-microorganism cultures to infer causal relationships to disease. When Koch’s (...)
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  12.  41
    How causal are microbiomes? A comparison with the Helicobacter pylori explanation of ulcers.Kate E. Lynch, Emily C. Parke & Maureen A. O’Malley - 2019 - Biology and Philosophy 34 (6):62.
    Human microbiome research makes causal connections between entire microbial communities and a wide array of traits that range from physiological diseases to psychological states. To evaluate these causal claims, we first examine a well-known single-microbe causal explanation: of Helicobacter pylori causing ulcers. This apparently straightforward causal explanation is not so simple, however. It does not achieve a key explanatory standard in microbiology, of Koch’s postulates, which rely on manipulations of single-microorganism cultures to infer causal relationships to disease. When Koch’s (...)
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  13. Explaining disease: Correlations, causes, and mechanisms. [REVIEW]Paul Thagard - 1998 - Minds and Machines 8 (1):61-78.
    Why do people get sick? I argue that a disease explanation is best thought of as causal network instantiation, where a causal network describes the interrelations among multiple factors, and instantiation consists of observational or hypothetical assignment of factors to the patient whose disease is being explained. This paper first discusses inference from correlation to causation, integrating recent psychological discussions of causal reasoning with epidemiological approaches to understanding disease causation, particularly concerning ulcers and lung cancer. It then (...)
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  14.  31
    Composite paradigms in medicine: Analysing Gillies' claim of reclassification of disease without paradigm shift in the case of Helicobacter pylori.Joseph Hutton - 2012 - Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences 43 (3):643-654.
    Since the publication of Kuhn’s The Structure of Scientific Revolutions in 1962, the notion of paradigms has shaped the way that philosophy views scientific discovery and how changes in what is regarded as empirical fact occur. This drew heavily on examples from the history of the natural sciences to support Kuhn’s hypothesis. However, some argue that medicine is different from the natural sciences. Gillies has proposed another theory of how paradigms apply to medicine; that of composite paradigms. In doing so, (...)
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  15. Constructive Empiricism and Scientific Practice. A Case Study.Valeriano Iranzo - 2002 - Theoria: Revista de Teoría, Historia y Fundamentos de la Ciencia 17 (2):335-357.
    According to van Fraassen, constructive empiricism (CE) makes better sense of scientific activity than scientific realism (SR). I discuss a recent episode in biomedical research - investigations about Helicobacter Pylori and its relation to peptic ulcer. CE's expedient to cope with it is a sort of belief substitution. I argue that replacing realist beliefs by empiricist surrogates (as-if beliefs) could accommodate scientists' expectations and behavior. Nonetheless, theoretical agnosticism could hardly motivate scientists to focus just on the observational consequences (...)
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  16.  3
    ‘The gut war’: Functional somatic disorders in the UK during the Second World War.Edgar Jones - 2012 - History of the Human Sciences 25 (5):30-48.
    Hospital admission and mortality statistics suggested that peptic ulcer reached a peak prevalence in the mid-1950s. During the Second World War, against this background of serious and common pathology, an epidemic of dyspepsia afflicted both service personnel and civilians alike. In the absence of reliable diagnostic techniques, physicians struggled to distinguish between life-threatening illness and mild, temporary disorders. This article explores the context in which non-ulcer stomach conditions flourished. At a time when fear was considered defeatist and (...)
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  17.  22
    ‘The gut war’: Functional somatic disorders in the UK during the Second World War.Edgar Jones - 2012 - History of the Human Sciences 25 (5):30-48.
    Hospital admission and mortality statistics suggested that peptic ulcer reached a peak prevalence in the mid-1950s. During the Second World War, against this background of serious and common pathology, an epidemic of dyspepsia afflicted both service personnel and civilians alike. In the absence of reliable diagnostic techniques, physicians struggled to distinguish between life-threatening illness and mild, temporary disorders. This article explores the context in which non-ulcer stomach conditions flourished. At a time when fear was considered defeatist and (...)
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  18.  8
    Discovery and Acceptance.Paul Thagard - unknown
    In 1983, Dr. J. Robin Warren and Dr. Barry Marshall reported finding a new kind of bacteria in the stomachs of people with gastritis. Warren and Marshall were soon led to the hypothesis that peptic ulcers are generally caused, not by excess acidity or stress, but by a bacterial infection. Initially, this hypothesis was viewed as preposterous, and it is still somewhat controversial. In 1994, however, a U. S. National Institutes of Health Consensus Development Panel concluded that infection appears (...)
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  19.  11
    Diets and Circadian Rhythms: Challenges from Biology for Medicine.Wim Steen & Vincent Ho - 2006 - Acta Biotheoretica 54 (4):267-275.
    Autoimmune diseases such as rheumatoid arthritis and gastrointestinal disorders such as stomach ulcers are often treated with drugs. NSAIDs, a common treatment in rheumatoid arthritis, may cause stomach ulcers which call for additional medications, notably antacids in the sense of drugs that suppress acid secretion by the stomach. Infection with Helicobacter pylori also plays a role in the ulcers. The infection is typically treated with antibiotics added to antacids. Considering NSAIDs and antacids, we suspect that overmedication is common to the (...)
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  20.  28
    Diets and circadian rhythms: Challenges from biology for medicine.Wim J. van der Steen & Vincent K. Y. Ho - 2006 - Acta Biotheoretica 54 (4):267-275.
    Autoimmune diseases such as rheumatoid arthritis and gastrointestinal disorders such as stomach ulcers are often treated with drugs. NSAIDs, a common treatment in rheumatoid arthritis, may cause stomach ulcers which call for additional medications, notably antacids in the sense of drugs that suppress acid secretion by the stomach. Infection with Helicobacter pylori also plays a role in the ulcers. The infection is typically treated with antibiotics added to antacids. Considering NSAIDs and antacids, we suspect that overmedication is common to the (...)
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  21.  28
    The Rise and Fall of Syphilis in Renaissance Europe.Eugenia Tognotti - 2009 - Journal of Medical Humanities 30 (2):99-113.
    The rapid changes that syphilis underwent after the first major outbreak that occurred in Naples in the mid-1490s are believed to constitute the first well-documented example of a human disease. The new plague was of exceptional virulence, highly contagious and causing severe ulceration at the site of infection. According to medical and other historical sources, the ‘genius epidemics’ changed some years after this onset, and a slower-progressing form of syphilis seems to have replaced the initial severe form, as do (...)
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  22.  25
    A Long-term follow-up study of women using different methods of contraception— an interim report.Martin Vessey, Sir Richard Doll, Richard Peto, Bridget Johnson & Peter Wiggins - 1976 - Journal of Biosocial Science 8 (4):373-427.
    SummaryIn 1968, a prospective study was started in collaboration with the Family Planning Association to try to provide a balanced view of the beneficial and harmful effects of different methods of contraception. This investigation is now in progress at seventeen clinics and over 17,000 women are under observation. At the time of recruitment, all these women were married white British subjects, aged 25–39 years, who voluntarily agreed to participate. Fifty-six per cent were using oral contraceptives, 25% were using a diaphragm (...)
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  23.  11
    Expanding choice at the end of life.Dominic Wilkinson, Laura Gilbertson, Justin Oakley & Julian Savulescu - 2023 - Journal of Medical Ethics 49 (4):269-270.
    We are grateful to the commentators on our article1 for their thoughtful engagement with the ethical and clinical complexity of expanded terminal sedation (ETS) in end-of-life care. We will start by noting some points of common ground, before moving on to the more challenging ways in which TS might be permissibly expanded. First, several commentators pointed out, and we completely concur, that it is important to provide patients with full information about their end-of-life options, including the ‘outcomes, uncertainties and costs (...)
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  24.  5
    Tracing tradition. The idea of cancerous contagiousness from Renaissance to Enlightenment.Daniel Droixhe - 2020 - History of European Ideas 46 (6):754-765.
    ABSTRACT This paper is concerned with landmarks in the history of the idea of cancerous contagiousness from the Renaissance to the Enlightenment. The origins of the idea of cancerous contagiousness is considered on the basis of Galen’s distinction between scabiesleprosy, cancer and elephantiasis. Paul of Aegina (seventh century) established the association between these latter diseases. In the fourteenth century, a ‘new line of inquiry’ developed concerning the transmission of diseases like plague, and G. Fracastoro (1546) applied this approach by stating (...)
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  25.  5
    Cancer and the Philosophy of the Far East: Previously Published As Macrobiotics: the Way of Healing.George Ohsawa - 1971 - Binghamton, N.Y., Swan House Pub. Co..
    George Ohsawa's account of his 1955 visit to Dr. Albert Schweitzer's hospital in Africa and how he discovers a cure for deadly tropical ulcers followed by his teachings on the physical and mental aspects of disease, the traditional approach to healing versus the symptomatic medicine of today, and the priniciple of the unifying principle of yin and yang--the foundation of macrobiotics.
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  26.  13
    Postoperative nutritional support of the patient with gut gangrene—a case report.Samra Imran & Afifa Tanweer - 2019 - Journal of Health, Population and Nutrition 38 (1):11.
    Bowel necrosis is a commonly observed condition in elderly patients with longstanding diabetes. In such condition, intestinal resection is usually performed for the removal of the gangrenous part. Post-surgical dietary management after bowel resection poses several challenges for the health care team. The case presented in this study is that of an elderly diabetic male who developed acute renal failure as a result of neglect in post-surgical feeding after intestinal resection. After the intervention by a trained dietitian, a transitional diet (...)
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  27.  28
    Pressure Ulcer: prevention protocols and prevalence.Doris Wilborn, Ruud Halfens & Theo Dassen - 2006 - Journal of Evaluation in Clinical Practice 12 (6):630-638.
  28.  19
    Stress ulcer prophylaxis in non‐critically ill patients: a prospective evaluation of current practice in a general surgery department.Coraline Bez, Nancy Perrottet, Tobias Zingg, En-Ling Leung Ki, Nicolas Demartines & André Pannatier - 2013 - Journal of Evaluation in Clinical Practice 19 (2):374-378.
  29.  52
    Pressure ulcer prevalence in Europe: a pilot study.Katrien Vanderwee, Michael Clark, Carol Dealey, Lena Gunningberg & Tom Defloor - 2007 - Journal of Evaluation in Clinical Practice 13 (2):227-235.
  30.  43
    Pressure ulcer risk screening in hospitals and nursing homes with a general nursing assessment tool: evaluation of the care dependency scale.Elke I. Mertens, Ruud J. G. Halfens, Ekkehart Dietz, Ramona Scheufele & Theo Dassen - 2008 - Journal of Evaluation in Clinical Practice 14 (6):1018-1025.
  31.  29
    Stress ulcer prophylaxis for non‐critically ill patients on a teaching service.Kevin O. Hwang, Sanja Kolarov, Lee Cheng & Rebecca A. Griffith - 2007 - Journal of Evaluation in Clinical Practice 13 (5):716-721.
  32.  14
    Ulcers in Papua New Guinea: a contemplation on fairness.H. Relyea-Ashley - 2010 - The Pharos of Alpha Omega Alpha-Honor Medical Society. Alpha Omega Alpha 74 (4):34 - 38.
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  33.  17
    Pressure ulcer prevention in intensive care patients: guidelines and practice.Eman S. M. Shahin, Theo Dassen & Ruud J. G. Halfens - 2009 - Journal of Evaluation in Clinical Practice 15 (2):370-374.
  34.  49
    Pressure ulcer prevalence in intensive care patients: a cross‐sectional study.Eman S. M. Shahin, Theo Dassen & Ruud J. G. Halfens - 2008 - Journal of Evaluation in Clinical Practice 14 (4):563-568.
  35.  44
    Ulcers and bacteria II: Instruments, experiments, and social interactions.Paul Thagard - 1998 - Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences 29 (2):317-342.
    My description of the cognitive processes involved in the discovery, development, and acceptance of the bacterial theory of ulcers might have left the impression that science is all in the mind (Thagard, forthcoming-b). But only part of the story of the bacterial theory of ulcers is psychological. This paper discusses the important role of physical interaction with the world by means of instruments and experiments, and the equally important role of social interactions among the medical researchers who developed the theory. (...)
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  36.  18
    Ulcers and bacteria I: discovery and acceptance.Paul Thagard - 1998 - Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences 29 (1):107-136.
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  37. Disease.Rachel Cooper - 2002 - Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences 33 (2):263-282.
    This paper examines what it is for a condition to be a disease. It falls into two sections. In the first I examine the best existing account of disease (as proposed by Christopher Boorse) and argue that it must be rejected. In the second I outline a more acceptable account of disease. According to this account, by disease we mean a condition that it is a bad thing to have, that is such that we consider the (...)
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  38. Infectious Disease Ontology.Lindsay Grey Cowell & Barry Smith - 2009 - In Infectious Disease Informatics. New York: Springer New York. pp. 373-395.
    Technological developments have resulted in tremendous increases in the volume and diversity of the data and information that must be processed in the course of biomedical and clinical research and practice. Researchers are at the same time under ever greater pressure to share data and to take steps to ensure that data resources are interoperable. The use of ontologies to annotate data has proven successful in supporting these goals and in providing new possibilities for the automated processing of data and (...)
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  39.  17
    Ulcers and bacteria II: Instruments, experiments, and social interactions.Paul Thagard - 1998 - Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences 29 (2):317-342.
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  40. Rare diseases in healthcare priority setting: should rarity matter?Andreas Albertsen - 2022 - Journal of Medical Ethics 48 (9):624-628.
    Rare diseases pose a particular priority setting problem. The UK gives rare diseases special priority in healthcare priority setting. Effectively, the National Health Service is willing to pay much more to gain a quality-adjusted life-year related to a very rare disease than one related to a more common condition. But should rare diseases receive priority in the allocation of scarce healthcare resources? This article develops and evaluates four arguments in favour of such a priority. These pertain to public values, (...)
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  41. Health, Disease, and Illness: Concepts in Medicine.Arthur L. Caplan, James J. McCartney & Dominic A. Sisti (eds.) - 2004 - Georgetown University Press.
    Health, Disease, and Illness brings together a sterling list of classic and contemporary thinkers to examine the history, state, and future of ever-changing "concepts" in medicine.
  42.  24
    Disease and value: A rejection of the value-neutrality thesis.George J. Agich - 1982 - Theoretical Medicine: An International Journal for the Philosophy and Methodology of Medical Research and Practice 4:27-41.
    RECENT PHILOSOPHICAL ATTENTION TO THE LANGUAGE OF DISEASE HAS FOCUSED PRIMARILY ON THE QUESTION OF ITS VALUE-NEUTRALITY OR NON-NEUTRALITY. PROPONENTS OF THE VALUE-NEUTRALITY THESIS SYMBOLICALLY COMBINE POLITICAL AND OTHER CRITICISMS OF MEDICINE IN AN ATTACK ON WHAT THEY SEE AS VALUE-INFECTED USES OF DISEASE LANGUAGE. THE PRESENT ESSAY ARGUES AGAINST TWO THESES ASSOCIATED WITH THIS VIEW: A METHODOLOGICAL THESIS WHICH TENDS TO DIVORCE THE ANALYSIS OF DISEASE LANGUAGE FROM THE CONTEXT OF THE PRACTICE OF MEDICINE AND A (...)
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  43.  20
    Obesity, Pressure Ulcers, and Family Enablers.Jeffrey P. Spike - 2018 - American Journal of Bioethics 18 (7):81-82.
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  44. Defining disease beyond conceptual analysis: an analysis of conceptual analysis in philosophy of medicine.Maël Lemoine - 2013 - Theoretical Medicine and Bioethics 34 (4):309-325.
    Conceptual analysis of health and disease is portrayed as consisting in the confrontation of a set of criteria—a “definition”—with a set of cases, called instances of either “health” or “ disease.” Apart from logical counter-arguments, there is no other way to refute an opponent’s definition than by providing counter-cases. As resorting to intensional stipulation is not forbidden, several contenders can therefore be deemed to have succeeded. This implies that conceptual analysis alone is not likely to decide between naturalism (...)
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  45.  29
    Exploring variation in pressure ulcer prevalence in Sweden and the USA: benchmarking in action.Lena Gunningberg, Nancy Donaldson, Carolyn Aydin & Ewa Idvall - 2012 - Journal of Evaluation in Clinical Practice 18 (4):904-910.
  46.  26
    The first national pressure ulcer prevalence survey in county council and municipality settings in Sweden.Lena Gunningberg, Ami Hommel, Carina Bååth & Ewa Idvall - 2012 - Journal of Evaluation in Clinical Practice 19 (5):862-867.
  47.  12
    Disease as a Theoretical Concept: The Case of HPV-It Is.Alex Broadbent - 2014 - Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences 48:250-257.
    If there is any value in the idea that disease is something other than the mere absence of health then that value must lie in the way that diseases are classified. This paper offers further development of a view advanced previously, the 'contrastive model' of disease: it develops the account to handle asymptomatic disease ; and in doing so it relates the model to a broadly biostatistical view of health. The developments are prompted by considering cancers featuring (...)
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  48.  9
    Dangerous disease & dangerous therapy in Jewish medical ethics: principles and practice.Akiva Tatz - 2010 - Southfield, MI: Targum Press.
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  49.  58
    Dysfunction, Disease, and the Limits of Selection.Zachary Ardern - 2018 - Biological Theory 13 (1):4-9.
    Paul Griffiths and John Matthewson argue that selected effects play the key role in determining whether a state is pathological. In response, it is argued that a selected effects account faces a number of difficulties in light of modern genomic research. Firstly, a modern history approach to selection is problematic as a basis for assigning function to human traits in light of the small population sizes in the hominin lineage, which imply that selection has played a limited role in shaping (...)
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  50.  20
    Rare Disease, Advocacy and Justice: Intersecting Disparities in Research and Clinical Care.Meghan C. Halley, Colin M. E. Halverson, Holly K. Tabor & Aaron J. Goldenberg - 2023 - American Journal of Bioethics 23 (7):17-26.
    Rare genetic diseases collectively impact millions of individuals in the United States. These patients and their families share many challenges including delayed diagnosis, lack of knowledgeable providers, and limited economic incentives to develop new therapies for small patient groups. As such, rare disease patients and families often must rely on advocacy, including both self-advocacy to access clinical care and public advocacy to advance research. However, these demands raise serious concerns for equity, as both care and research for a given (...)
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