In lieu of an abstract, here is a brief excerpt of the content:Kennedy Institute of Ethics Journal 10.2 (2000) 175-188 [Access article in PDF] Scope Note 38 Bioethics Resources on the Web * Once described as an "enormous used book store with volumes stacked on shelves and tables and overflowing onto the floor" (Pool, Robert. 1994. Turning an Info-Glut into a Library. Science 266 (7 October): 20-22, p. 20), Internet resources now receive numerous levels of organization, from basic directory listings (...) to elaborate "links" (cross-references to other Internet documents) that flash and glow in the dark. In many ways, the Internet functions as a direct extension of the traditional library. Following linked references across various sites is an electronic version of browsing library stacks, and the serendipitous discoveries made while "surfing the Net" recall the wonders of physically going "book-to-book." Although many of the Internet's best aspects augment library strengths by eliminating physical distance from sources, Net resources pose unique problems for researchers. It is not always clear who is responsible for the content of Web documents, when the document was produced, or how often (if ever) it is updated. Internet resource tools, then, must enable researchers to identify appropriate resources and to evaluate what they find when they get there. Web Research as Taking "Snapshots" Given the Internet's visual nature and fluid content, the process of conducting research on the Web has been likened to taking an informal picture of information on a specific date at a particular time. This metaphor also conveys the "zoom-in" aspect of searching through Web pages by going from general to specific categories. In the first section of this Scope Note, National Reference Center for Bioethics Literature (NRCBL) staff present a snapshot of bioethics resources taken during the spring months of 2000. Entries are divided into the categories of directories, electronic journals, full-text documents, news/current awareness, and teaching resources. In the two subsequent sections, this series of categories is repeated for entries on a specific topic within bioethics-genetics-and again for general search and evaluation tools. Where a Web site may contain pages applicable [End Page 175] to more than one category, multiple entries are made for that site with appropriate information for each category.Much as telecommunication advances have strengthened the relationship of patients and providers as partners, the dynamic nature of the Internet acknowledges that the researcher functions as a librarian whenever accessing the Web. It is our hope that BIOETHICSLINE and the other NRCBL databases not only will enable researchers to search the Web more efficiently, but also will help them to evaluate what they find when they get there. Bioethicsline on the Web: An International Plan in Progress Once only available through libraries, the U.S. National Library of Medicine (NLM), the funding agency for the ongoing development of the BIOETHICS LINE® database from the Kennedy Institute, has provided free Web access to that database of 63,000 citations since September 1998 through Internet Grateful Med. Plans are now underway to eliminate such specialty databases and incorporate all citations into PubMed (for journal articles) or LOCATORplus (for book-like materials and chapters in books). Both of these databases are likewise available at no cost on the Web. In the transition to PubMed and LOCATORplus some features of BIOETHICSLINE that presently are available may be lost. Researchers are encouraged to contact the National Reference Center for Bioethics Literature with search requests or for search strategy assistance with either the current or the future system ([email protected]).The inclusion of bioethics citations in PubMed and LOCATORplus will have several advantages. First, unique keywords from the Bioethics Thesaurus will be considered for inclusion in Medical Subject Headings (MeSH), the indexing vocabulary for PubMed and LOCATORplus, thereby enhancing retrieval of relevant clinical literature by offering more precise terminology covering ethical issues. Second, it will be easier to identify foreign-language materials, which are not currently included in the scope of BIOETHICSLINE. Third, the updating schedule will become more frequent. On the other hand, there may be some loss of searching precision because certain specialized features... (shrink)

Background Medical research so flawed as to be retracted may put patients at risk by influencing treatments. Objective To explore hypotheses that more patients are put at risk if a retracted paper appears in a journal with a high impact factor (IF) so that the paper is widely read; is written by a ‘repeat offender’ author who has produced other retracted research; or is a clinical trial. Methods English language papers (n=788) retracted from the PubMed database between 2000 and (...) 2010 were evaluated. Only those papers retracting research with humans or freshly derived human material were included; 180 retracted primary papers (22.8%) met inclusion criteria. Subjects enrolled and patients treated were tallied, both in the retracted primary studies and in 851 secondary studies that cited a retracted primary paper. Results Retracted papers published in high-IF journals were cited more often (p=0.0004) than those in low-IF journals, but there was no difference between high- and low-IF papers in subjects enrolled or patients treated. Retracted papers published by ‘repeat offender’ authors did not enrol more subjects or treat more patients than papers by one-time offenders, nor was there a difference in number of citations. However, retracted clinical trials treated more patients (p=0.0002) and inspired secondary studies that put more patients at risk (p=0.0019) than did other kinds of medical research. Conclusions If the goal is to minimise risk to patients, the appropriate focus is on clinical trials. Clinical trials form the foundation of evidence-based medicine; hence, the integrity of clinical trials must be protected. (shrink)

Media attention to retracted research suggests that a substantial number of papers are corrupted by misinformation. In reality, every paper contains misinformation; at issue is whether the balance of correct versus incorrect information is acceptable. This paper postulates that analysis of retracted research papers can provide insight into medical misinformation, although retracted papers are not a random sample of incorrect papers. Error is the most common reason for retraction and error may be the principal cause of misinformation as well. (...) Still, one-quarter of retracted papers are fraudulent, and misinformation may also arise through fraud. This paper hypothesises that error and fraud are the main sources of misinformation and that error is more common than fraud. Retraction removes misinformation from the literature; bias is non-retracted misinformation. Bias arises when scientific impropriety results in false research findings. Impropriety can involve experimental design, data collection, data analysis, or data presentation. Yet impropriety also arises through earnest error or statistical naiveté; not all bias is fraud. Several measures are proposed to minimise misinformation in the medical literature, including: greater detail in the clinical trial registry, with rigorous definition of inclusion and exclusion criteria and primary endpoints; clear statistical criteria for every aspect of clinical trials, especially sample size; responsibility for data integrity that accrues to all named authors; increased transparency as to how the costs of research were paid; and greater clarity as to the reasons for retraction. Misinformation can arise without malicious intent; authors of incorrect papers are owed a presumption of incompetence, not malice. (shrink)

Background Clinical papers so flawed that they are eventually retracted may put patients at risk. Patient risk could arise in a retracted primary study or in any secondary study that draws ideas or inspiration from a primary study. Methods To determine how many patients were put at risk, we evaluated 788 retracted English-language papers published from 2000 to 2010, describing new research with humans or freshly derived human material. These primary papers—together with all secondary studies citing them—were evaluated using ISI (...) Web of Knowledge. Excluded from study were 468 basic science papers not studying fresh human material; 88 reviews presenting older data; 22 case reports; 7 papers retracted for journal error and 23 papers unavailable on Web of Knowledge. Overall, 180 retracted primary papers (22.8%) met the inclusion criteria. Subjects enrolled and patients treated in 180 primary studies and 851 secondary studies were combined. Results Retracted papers were cited over 5000 times, with 93% of citations being research related, suggesting that ideas promulgated in retracted papers can influence subsequent research. Over 28 000 subjects were enrolled—and 9189 patients were treated—in 180 retracted primary studies. Over 400 000 subjects were enrolled—and 70 501 patients were treated—in 851 secondary studies which cited a retracted paper. Papers retracted for fraud (n=70) treated more patients per study (p<0.01) than papers retracted for error (n=110). Conclusions Many patients are put at risk by retracted studies. These are conservative estimates, as only patients enrolled in published clinical studies were tallied. (shrink)

Over the last two decades judges (and regulators) in all common law jurisdictions have increased their reliance on published medical and scientific literature. During the same period biomedical research has undergone fundamental and unprecedented change. This article explores some of the changes to the location, organization and funding of biomedical research in order to assess their implications for liability and proof. Focusing on peer review and publication, along with reforms promoted by the editors of some of the world's (...) pre-eminent general medical journals (e.g. British Medical Journal, the Lancet, Journal of the American Medical Association and the New England Journal of Medicine), this article considers how judges might respond to recent findings which suggest that corporate sponsorship systematically biases biomedical research. Given that common law judges have been reforming rules of evidence and procedure in search of impartial expertise and privileging published biomedical research, how should they respond to the strategic manipulation of the scientific record? (shrink)

Anecdotes have shown that some articles on profitable drugs are constructed by and shepherded through publication by pharmaceutical companies and their agents, whose influence is largely invisible to readers. This is ghost-management, the substantial but unrecognized research, analysis, writing, editing and/or facilitation behind publication. Publicly available documents suggest that these practices extremely widespread affecting up to 40% of clinical trial reports in key periods but it has been unclear how representative these documents are. This article presents the results of an (...) investigative sampling of the self-presentation of publication planning services, and presents this and other evidence of a sizable publication planning industry. Thus different lines of evidence indicate that ghost-management is a common and important phenomenon, strongly affecting the published medical literature in the service of marketing. (shrink)

The aim of the study is to encourage a critical debate on the use of normality in the medical literature on DSD or intersex. For this purpose, a scoping review was conducted to identify and map the various ways in which “normal” is used in the medical literature on DSD between 2016 and 2020. We identified 75 studies, many of which were case studies highlighting rare cases of DSD, others, mainly retrospective observational studies, focused on improving (...) diagnosis or treatment. The most common use of the adjective normal was in association with phenotypic sex. Overall, appearance was the most commonly cited criteria to evaluate the normality of sex organs. More than 1/3 of the studies included also medical photographs of sex organs. This persistent use of normality in reference to phenotypic sex is worrisome given the long-term medicalization of intersex bodies in the name of a “normal” appearance or leading a “normal” life. Healthcare professionals should be more careful about the ethical implications of using photographs in publications given that many intersex persons describe their experience with medical photography as dehumanizing. (shrink)

The prevalence, course and prognosis of diseases in patients referred to tertiary medical centers frequently differ from those treated in primary care settings. Extrapolation of findings from one population to another may therefore be unwarranted. Other factors that contribute to misinterpretation of medical literature include failure to distinguish statistical from clinical significance and advocacy of medical interventions prior to adequate clinical trials.

Context Physicians are regularly confronted with research that is funded or presented by industry. Objective To assess whether physicians discount for conflicts of interest when weighing evidence for prescribing a new drug. Design and setting Participants were presented with an abstract from a single clinical trial finding positive results for a fictitious new drug. Physicians were randomly assigned one version of a hypothetical scenario, which varied on conflict of interest: ‘presenter conflict’, ‘researcher conflict’ and ‘no conflict’. Participants 515 randomly selected (...) Fellows in the American College of Obstetricians and Gynecologists' Collaborative Ambulatory Research Network; 253 surveys (49%) were returned. Main object measures The self-reported likelihood that physicians would prescribe the new drug as a first-line therapy. Results Physicians do not significantly discount for conflicts of interest in their self-reported likelihood of prescribing the new drug after reading the single abstract and scenario. However, when asked explicitly to compare conflict and no conflict, 69% report that they would discount for researcher conflict and 57% report that they would discount for presenter conflict. When asked to guess how favourable the results of this study were towards the new drug, compared with the other trials published so far, their perceptions were not significantly influenced by conflict of interest information. Conclusion While physicians believe that they should discount the value of information from conflicted sources, they did not do so in the absence of a direct comparison between two studies. This brings into question the effectiveness of merely disclosing the funding sources of published studies. (shrink)

The purpose of this study was to evaluate recognition of pathologists and radiologists as coauthors in case reports in the field of surgical oncology. The MEDLINE database was searched for all full free text case reports involving human material published from April 1, 2011 until March 31, 2016, using search terms: “case report” + “tumors” + “surgery” + “malignant”. The search strategy identified a total of 1427 case reports of which 907 were included in this analysis. Of 807 articles with (...) histopathological images and/or descriptions, 352 did not acknowledge or include the pathologist as a coauthor. Of 662 case reports with radiographic images and/or their description, 537 did not list the radiologist as coauthor nor acknowledge them. In case reports containing histopathological images, significantly more pathologists were either listed as coauthors or acknowledged compared to those who were not. However, among case reports containing radiographic images, there were significantly less articles either listing radiologists as coauthors or acknowledging them compared to a larger proportion of articles in which radiologists were omitted. In conclusion, pathologists and radiologists are underrecognized as coauthors in surgical oncology case reports in spite of obvious proof of their contribution to manuscript preparation. When involved in research and publishing, all physicians should be aware of fair and honest collaboration with specialists in other clinical and non-clinical disciplines to better serve the scientific community. (shrink)

Name der Zeitschrift: Byzantinische Zeitschrift Jahrgang: 108 Heft: 1 Seiten: 129-156.

Medical school curricula, although traditionally and historically dominated by science, have generally accepted, appreciated, and welcomed the inclusion of literature over the past several decades. Recent concerns about medical professional formation have led to discussions about the specific role and contribution of literature and stories. In this article, we demonstrate how professionalism and the study of literature can be brought into relationship through critical and interrogative interactions based in the literary skill of close reading. (...) class='Hi'>Literature in medicine can question the meaning of “professionalism” itself, thereby resisting standardization in favor of diversity method and of outcome. Literature can also actively engage learners with questions about the human condition, providing a larger context within which to consider professional identity formation. Our fundamental contention is that, within a medical education framework, literature is highly suited to assist learners in questioning conventional thinking and assumptions about various dimensions of professionalism. (shrink)

Celebrated for disproving the traditional view that lack of oxygen at birth (perinatal asphyxia) contributes significantly to cerebral palsy, a 1986 New England Journal of Medicine article by Karin Nelson and Jonas Ellenberg engineered a new consensus in the medical community: that lack of oxygen at birth rarely causes cerebral palsy. We demonstrate that the article's central argument relies on straightforwardly fallacious statistical reasoning, and we discuss significant implications -- e.g. how carefully fetuses are monitored during labor and delivery, (...) expert testimony in malpractice cases, and public policy decisions. (shrink)

Efforts to reform medical education have emphasized the need to formalize instruction in medical ethics. However, the discipline of medical ethics education is still searching for an acceptable identity among North American medical schools; in these schools, no real consensus exists on its definition. Medical educators are grappling with not only what to teach (content) in this regard, but also with how to teach (process) ethics to the physicians of tomorrow. A literature review focused (...) on medical ethics education among North American medical schools reveals that instruction in ethics is considered to be vitally important for medical students. Agreement by medical educators on a possible core curriculum in ethics should be explored. To develop such a curriculum, deliberative curriculum inquiry by means of a targeted Delphi technique may be a useful methodology. However, the literature reveals that medical curricular change is notoriously slow. General implications for medical ethics education as a discipline are discussed. (shrink)

Samuel Beckett and Jorge Luis Borges have presented 20th century literature with a distinctive gallery of solitary figures who suffer from a series of physiological ailments: invalidism, decrepitude, infirmity and blindness, as well as neurological conditions such as amnesia and autism spectrum disorders. Beckett and Borges were concerned with the dynamics between illness and creativity, the literary representation of physical and mental disabilities, the processes of remembering and forgetting, and the inevitability of death. This article explores the depiction of (...) physically and mentally disabled characters in Borges' Funes the Memorious (1942)—a story about an Uruguayan gaucho who has been left paralysed after a fall from a horse which simultaneously endowed him with an infallible memory and perception—and Beckett's Trilogy: Molloy (1951), Malone Dies (1951) and The Unnamable (1953). It examines the prodigious memory of Funes and the forgetful minds of Molloy and Malone with reference to influential neuropsychological studies such as Alexander Luria's twofold exploration of memory and forgetfulness in The Mind of a Mnemonist (1968) and The Man with a Shattered World (1972). The article demonstrates that in contrast to Beckett's amnesiacs and Luria's brain-damaged patient, who are able to transcend their circumstances through cathartic writing, Borges' and Luria's mnemonic prodigies fail to achieve anything significant with their unlimited memories and remain imprisoned within their cognitive disabilities. It reveals that medical discourses can provide invaluable insights and lead to a deeper understanding of the minds and bodily afflictions of literary characters. (shrink)

This is a reply to Dan Clouser's philosophical commentary on the essays in this issue. Important assumptions that condition his perspective on the essays are identified and analyzed. Attention is drawn to his unhistorical emphasis on the exclusive importance of philosophy in ethical thought, and his resulting insistence that any discipline wishing to contribute to biomedical discourse must adopt the assumptions and methodologies of philosophy. Clouser's “three tenets” are examined, and then the question of what literature, considered in terms (...) of its own aims and methodologies, has to offer to medical ethics. Genuine dialogue about medical ethics between philosophers and literary scholars is both desirable and important, but becomes possible only if the methods and insights of each discipline are honored in the pursuit of the overall goals they hold in common. (shrink)

To the general reader and watcher of television programmes medical ethics may appear to be something new. This is not so, for hundreds of articles and many books have appeared over the last 10 years or so to discuss and analyse the problems arising from the practice of medicine. In this study of two larger works - Medical Ethics and Manipulation - both by Bernard Häring, a Roman Catholic theologian - Father Brendan Soane analyses these in some detail (...) and sets their ideas in the context of what has already been written on the major issues of medical ethics and what is likely to be foremost in discussion in the near future. Many readers of this Journal already have the particular background of knowledge to see the problems in medicine which are in fact ethical but the general reader may require help and enlightenment and this is now provided for a special field within the field. (shrink)

The essays in this Journal issue offer examples of how textual analysis, literary theory, and the reading and writing of literature can contribute to an understanding of ethical issues in medicine. The editors' purpose in such an issue is to stimulate discussion between philosopher-ethicists and literary scholars whose work concerns this topic. With the concluding essays by editors Clouser and Hawkins, this discussion begins.

This paper reviews the ethical literature on conflicts between health professionals and parents about medical decision-making for children. We present the results of a systematic review which addressed the question ‘when health professionals and parents disagree about the appropriate course of medical treatment for a child, under what circumstances is the health professional ethically justified in overriding the parents’ wishes?’ We identified nine different ethical frameworks that were put forward by their authors as applicable across various ages (...) and clinical scenarios. Each of these frameworks centred on a different key moral concept including harm, constrained parental autonomy, best interests, medically reasonable alternatives, responsible thinking and rationality. (shrink)

How do we know what is right, or before that, how do we recognize what is morally salient? Such matters lie deeper than can be plumbed by traditional philosophical modes of inquiry alone. Careful study of them requires also the study of literature, with the meticulous appraisal that it encourages of the intricate, tangled issues involved in apprehending the world, finding our way in it, and representing it to others. In this way, the study of literature contributes to (...) a richer and more complex perspective on moral problems, and a more cautious view of the status and breadth of attempts to solve those problems. (shrink)

Objectives: To present an analysis of “futility” that is useful in the clinical setting.Design: Literature review.Material and methods: According to Medline more than 750 articles have been published about medical futility. Three criteria singled out 43 of them. The authors' opinions about futility were analysed using the scheme: “If certain conditions are satisfied, then a particular measure is futile” and “If a particular measure is futile, then certain moral consequences are implied”.Results: Regarding conditions, most authors stated that judgments (...) about futility should be made by physicians. The measure was usually some kind of medical treatment, and the goals related to quality of life, physiological improvement, or prolongation of life. The probability of success in reaching the goal was in most cases described in semiquantitative terms. Regarding consequences, the authors stated that health care professionals may withhold or withdraw a futile measure, most often after a dialogue with the patient , but sometimes without informing the patient , or with one-way information . Over time more and more articles recommend that the patient should be involved in joint decision making. Based on this literature review a clinical model was developed.Conclusions: The model, requiring that conditions and consequences should be made explicit, may, in “futility situations”, facilitate both the collection of the necessary information and make the moral implications visible. It also makes communication about measures considered to be futile possible without using such ambiguous terms as “futile”. (shrink)

BackgroundIt is widely acknowledged that there is a global divide on health care and health research known as the 10/90 divide.MethodsA retrospective survey of articles published in the BMJ, Lancet, NEJM, Annals of Internal Medicine & JAMA in a calendar year to examine the contribution of the developing world to medical literature. We categorized countries into four regions: UK, USA, Other Euro-American countries (OEAC) and (RoW). OEAC were European countries other than the UK but including Australia, New Zealand (...) and Canada. RoW comprised all other countries.ResultsThe average contribution of the RoW to the research literature in the five journals was 6.5%. In the two British journals 7.6% of the articles were from the RoW; in the three American journals 4.8% of articles were from RoW. The highest proportion of papers from the RoW was in the Lancet (12%). An analysis of the authorship of 151 articles from RoW showed that 104 (68.9%) involved authorship with developed countries in Europe or North America. There were 15 original papers in these journals with data from RoW but without any authors from RoW.ConclusionsThere is a marked under-representation of countries in high-impact general medical journals. The ethical implications of this inequity and ways of reducing it are discussed. (shrink)

The clinical ethics literature is striking for the absence of an important genre of scholarship that is common to the literature of clinical medicine: systematic reviews. As a consequence, the field of clinical ethics lacks the internal, corrective effect of review articles that are designed to reduce potential bias. This article inaugurates a new section of the annual "Clinical Ethics" issue of the Journal of Medicine and Philosophy on systematic reviews. Using recently articulated standards for argument-based normative ethics, (...) we provide a systematic review of the literature on concealed medication for the management of psychiatric disorders. Four steps are completed: identify a focused question; conduct a literature search using key terms relevant to the focused question; assess the adequacy of the argument-based methods of the papers identified; and identify conclusions drawn in each paper and whether they apply to the focused question. We identified seven papers and provide an assessment of them. While none of the papers fully meet the standards of argument-based ethics, they did provide rationales for the use of concealed medications, with the important requirement such a practice be accountable in explicit organizational policy to prevent abuse of patients with mental illness or dementia. (shrink)

In order to determine whether there is a significant difference between the medical literature and the surgical literature in terms of their bioethics content, we conducted a computerized search of the MEDLINE database. The journals searched were selected from the 'Medicine' and 'Surgery' sections of the 'Brandon-Hill List', and the search was limited to 1992 issues of these journals. Three hundred and seven bioethics bibliographic records (out of a total of 11,239 articles indexed) were retrieved from the (...) 15 medical journals searched, while 17 bioethics bibliographic records (out of a total of 2,645 articles indexed) were retrieved from the 12 surgical journals searched. We conclude that there is a statistically significant (p < 0.001) difference between the medical literature and the surgical literature with respect to their quantitative bioethics content. (shrink)

The notion of autonomy commonly employed in medical ethics literature and practices is inadequate on three fronts: it fails to properly identify nonautonomous actions and choices, it gives a false account of which features of actions and choices makes them autonomous or nonautonomous, and it provides no grounds for the moral requirement to respect autonomy. In this paper I offer a more adequate framework for how to think about autonomy, but this framework does not lend itself to the (...) kinds of practical application assumed in medical ethics. A general problem then arises: the notion of autonomy used in medical ethics is conceptually inadequate, but conceptually adequate notions of autonomy do not have the practical applications that are the central concern of medical ethics. Thus, a revision both of the view of autonomy and the practice of “respect for autonomy” are in order. (shrink)

Medical-Legal Partnerships (MLPs) have been widely acclaimed for promoting health equity and achieving meaningful outcomes. Yet, little to no research has analyzed if this critical work has been done with communities — through meaningful engagement and building power — or if it has been done for communities without their involvement.

Clinical ethics records offer bioethics researchers a rich source of cases that clinicians have identified as ethically complex. In this paper, we suggest that clinical ethics records can be used to point to types of cases that lack attention in the current bioethics literature, identifying new areas in need of more detailed bioethical work. We conducted an analysis of the clinical ethics records of one paediatric hospital in Australia, focusing specifically on conflicts between parents and health professionals about a (...) child’s medical treatment. We identified, analysed, and compared cases of this type from the clinical ethics records with cases of this type discussed in bioethics journals. While the cases from journals tended to describe situations involving imminent risk to the child’s life, a significant proportion of the clinical ethics records cases involved different stakes for the child involved. These included distress, poorer functional outcome, poorer psychosocial outcome, or increased risk of surgical complications. Our analysis suggests that one type of case that warrants more detailed ethics research is parental refusal of recommended treatment, where the refusal does not endanger the child’s life but rather some other aspect of the child’s well-being. (shrink)

This paper challenges the view that there is one medical model of disability monolithically and oppressively imposed on disabled people. Because the presence of disability may be ambiguous in any given case, multiple actors, lay and professional, may invoke particular medical models of disability and advance competing claims about an individual’s disabilities and related needs. The literature for parents of disabled children is seen as a resource on which parents can draw in making claims about their children’s (...) disabilities and disability-related needs. Particular attention is given to the assumptions that this literature makes about the identity, resources and dispositions of the audience. Ultimately, these assumptions favor disability claims made by white, highly educated, upper-income parents. (shrink)