In France between 1780 and 1815, doctors opened a broad correspondence with medical faculties and public officials about foetal anomalies . Institutional and legal reforms forced doctors to encounter monstrous births with greater frequency, and they responded by developing new ideas about heredity and embryology to explain malformations to public officials. Though doctors achieved consensus on pathogenesis, they struggled to apply these ideas in forensic cases, especially with doubtful sex. Medical networks simultaneously allowed doctors to explore obstetrical techniques, (...) as licensing regulations forced practitioners into emotional encounters with child anomalies. Doctors thus developed a new ethics for treating monstrosities, viewing them as pathological specimens, forensic objects, and obstetrical tragedies. (shrink)

Las redes sociales asociadas al conocimiento resultan de interés tanto a los estudios en Ciencia Tecnología y Sociedad, como al desenvolvimiento del pensamiento de la complejidad que se desarrolla en el país. Su análisis explica la naturaleza social de la producción científica y la existencia del capital social, cuyas características se vinculan con la satisfacción y resolución de las necesidades sociales dentro de la población cubana. Se muestra una red, conformada en torno a la Publicación Archivo Médico de Camagüey, durante (...) los años 2003, 2004 y dos bimestres del 2005 sobre el desenvolvimiento de las co autorías dentro de ella. Delineando en qué forma los investigadores se relacionaron entre sí, para valorar algunos de sus resultados. Se describen, los grupos esenciales de investigación y sus principales fortalezas. Constituye una herramienta de trabajo, al exponer los cambios que están ocurriendo en torno a la Universidad Médica Camagüeyana The social networks associated to human knowledge are useful to the studies in Science Technology and Society. Their analysis explains the social nature of the scientific production and the existence of social resources, which link the satisfaction and resolution of the social necessities inside the Cuban population. The characteristics of this networks conformed in Archivo Médico de Camagüey publication on the development of co authorship from 2003 to 2005 were presented in this article. The researchers were related to each other in this work to value in which way they function together and analyze some of their results. The essential groups of investigation and their main strengths were also described. It constitutes a work tool for further research works, to considering the changes that are happening about the scientific knowledge production in Camagüey University of Medicine. (shrink)

A powerful movement is afoot to create a national computerized system of health records. Advocates claim it could save the health delivery system billions of dollars and improve the quality of health services. According to Lawrence Gostin, a leading commentator on privacy and health records, this new infrastructure is “already under way and [has] an aura of inevitability.” When it is in place, almost any information that is viewed as relevant to a decision in the health care delivery system would (...) be available to a large and yet undetermined number of individuals. The transformation of the collection and communication of health information from texts housed by health care providers and facilities to data electronically transmitted through networks of linked computers has significant implications for confidentiality and for data collection in scientific research. The best evidence clearly indicates that most people in the United States consider confidentiality for health information important and worry that the increased computerization of health records will result in inappropriate disclosure. (shrink)

A powerful movement is afoot to create a national computerized system of health records. Advocates claim it could save the health delivery system billions of dollars and improve the quality of health services. According to Lawrence Gostin, a leading commentator on privacy and health records, this new infrastructure is “already under way and [has] an aura of inevitability.” When it is in place, almost any information that is viewed as relevant to a decision in the health care delivery system would (...) be available to a large and yet undetermined number of individuals. The transformation of the collection and communication of health information from texts housed by health care providers and facilities to data electronically transmitted through networks of linked computers has significant implications for confidentiality and for data collection in scientific research. The best evidence clearly indicates that most people in the United States consider confidentiality for health information important and worry that the increased computerization of health records will result in inappropriate disclosure. (shrink)

This paper investigated the part played by collaborative practices in chaneling the work of prominent biochemists into the development of molecular biology. The RNA collaborative network that emerged in the 1960s in France encompassed a continuum of activities that linked laboratories to policy-making centers. New institutional frameworks such as the DGRST committees were instrumental in establishing new patterns of funding, and in offering arenas for multidisciplinary debates and boundary assessment. It should be stressed however, that although this collaborative (...) class='Hi'>network was based on centralized initiatives aimed at developing molecular biology as a new biological specialty, it operated above all as a nexus of practices. The main argument of this paper is that the central allocation of funds and resources, exemplified by the DGRST operation, actually enhanced the creation of a self-conscious community of biochemists turned molecular biologists by virtue of an increased circulation of tools, skills, and results that took place within the RNA network and a few analogous systems of exchange.Having hands on “things” viewed as identical for all practical purposes was a potent factor in changing the experimental systems and their meanings. Limited but shared means of doing helped to reduce uncertainties, change representations, and turn contingent decisions into meaningful choices. The collaborative enterprises then resulted in personal contacts and the transfer of skills and materials, which gradually incorporated the biochemical tools into systems producing facts relevant to molecular biology as defined by its early practitioners. In that sense, networking was a regulatory process that stabilized new research objects and acculturated French biochemists.The mere existence of such a collaborative network also changed the scale of the disciplining process. Collaborations may have been started for contingent motives, but multiple exchanges resulted in the emergence of a new collective, and amplified small displacements. Collaborations, however, worked both ways, and the RNA network may be viewed as an efficient “trading-post.” An unexpected outcome of the development of a conversion zone is the fact that, by the late 1960s, the former biochemists dominated the “new” world of molecular biology — both in terms of research habits, since interests in structural studies dominated the field, and in terms of institutional initiatives such as the creation of laboratories and institutes for molecular biology.As an example of the cognitive displacements achieved by the network, I have focused here on the stabilization of “messenger RNA” as a new biological entity. This process illustrates the role of “boundary objects” and other mediating innovations in the development of disciplinary structures. Students of science trained in the symbolic interactionism tradition have proposed that “boundary objects” enhance the multiple interactions between heterogeneous social worlds: they are robust enough to enhance unity, but plastic enough to be manipulated in different social and cultural contexts.81 Within the emerging network, messenger RNA was a weakly structured “genetic information carrier” in common use, but it could, at the same time, be a strongly structured “macromolecular structure” adapted to practical and local uses. Consequently, messenger RNA favored the association of groups of heterogeneous scientists with backgrounds and interests in medical biochemistry, genetics, physical chemistry, organic chemistry, and so forth. This contrast between general and local uses was also instrumental in integrating the manipulation of things and the negotiation of aims. In contrast to transfer RNAs, which in the French context remained objects for chemical (and mainly structural) studies, messenger RNA became a key component of the new culture of “genetic information”. Messenger RNA was a loose theoretical entity described as a “genetic information carrier” in the policy-making documents, while operational but tacit and more conflicting definitions prevailed at the bench. In other words, messenger RNA was not only a classical “boundary object” but also a “flag object,” which tightened the collaborative network by mediating between the DGRST offices and the laboratories. (shrink)

When surprising events occur, people naturally try to generate explanations of them. Such explanations usually involve hypothesizing causes that have the events as effects. Reasoning from effects to prior causes is found in many domains, including: Social reasoning: when friends are acting strange, we conjecture about what might be bothering them. Legal reasoning: when a crime has been committed, jurors must decide whether the prosecution's case gives a convincing explanation of the evidence. Medical diagnosis: given a set of symptoms, (...) a physician tries to decide what disease or diseases produced them. Fault diagnosis in manufacturing: when a piece of equipment breaks down, a trouble shooter must try to determine the cause of the breakdown. Scientific theory evaluation: scientists seek an acceptable theory to explain experimental evidence. What is the nature of such reasoning? (shrink)

BackgroundIn the pandemic time, many low- and middle-income countries are experiencing restricted access to COVID-19 vaccines. Access to imported vaccines or ways to produce them locally became the principal source of hope for these countries. But developing a strategy for success in obtaining and allocating vaccines was not easy task. The governments in those countries have faced the difficult decision whether to accept or reject offers of vaccine diplomacy, weighing the price and availability of COVID-19 vaccines against the concerns over (...) their efficacy and safety. We aimed to analyze public opinion regarding the governmental strategies to obtain COVID-19 vaccines in three Central Asian countries, focusing particularly on possible ethical issues.MethodsWe searched for opinions expressed either in Russian or in the respective national languages. We provided data on the debate within three countries, drawn from social media postings and other sources. The opinion data was not restricted by source and time. This allowed collecting a wide range of possible opinions that could be expressed regarding COVID-19 vaccine supply and human participation in the vaccine trial. We recognized ethical issues and possible questions concerning different ethical frameworks. We also considered scientific data and other information, in the process of reasoning.ResultsAs a result, public views on their respective government policies on COVID-19 vaccine supply ranged from strongly negative to slightly positive. We extracted the most important issues from public debates, for our analysis. The first issue involved trade-offs between quantity, speed, price, freedom, efficacy, and safety in the vaccines. The second set of issues arose in connection with the request to site a randomized trial in one of the countries (Uzbekistan). After considering additional evidence, we weighed individual and public risks against the benefits to make specific judgements concerning every issue.ConclusionsWe believe that our analysis would be a helpful example of solving ethical issues that can arise concerning COVID-19 vaccine supply around the world. The public view can be highly critical, helping to spot such issues. An ignoring this view can lead to major problems, which in turn, can become a serious obstacle for the vaccine coverage and epidemics’ control in the countries and regions. (shrink)

This paper will address the collaborative networks and the gendered organization of the scientific work at the first Unit on Human Genetics of the Mexican Institute for Social Security. There, women and men had different tasks, duties and authority according to their gender and individual and professional skills. I will focus on physician Susana Kofman, who specialized in cytogenetics with Jérôme Lejeune and Jean de Grouchy in France, and physician Leonor Buentello, who graduated in virus genetics in Germany. This (...) narrative intends to return them to the forefront of the history of cytogenetics and to illustrate the contribution of women to scientific developments when research on human genetics was becoming a medical domain for diagnosis at an international level. (shrink)

This article explores the activities of the Society of Apothecaries and its members following the foundation of a laboratory for manufacturing chemical medicines in 1672. In response to political pressures, the guild created an institutional framework for production which in time served its members both functionally and financially and established a physical site within which the endorsement of practical knowledge could take place. Demand from state and institutional customers for drugs produced under corporate oversight affirmed and supported the society's trading (...) role, with chemical and pharmaceutical knowledge utilized to fulfil collective and individual goals. The society benefited from the mercantile interests, political connections and practical expertise of its members, with contributions to its trading activities part of a much wider participation in London's medical, scientific and commercial milieu. Yet, as apothecaries became increasingly engaged in the practice of medicine rather than the preparation and sale of drugs, the society struggled to reconcile the changing priorities of those it represented, and tensions emerged between its corporate and commercial activities. (shrink)

BackgroundBiobanks provide an important foundation for genomic and personalised medicine. In order to enhance their scientific power and scope, they are increasingly becoming part of national or international networks. Public trust is essential in fostering public engagement, encouraging donation to, and facilitating public funding for biobanks. Globalisation and networking of biobanking may challenge this trust.MethodsWe report the results of an Australian study examining public attitudes to the networking and globalisation of biobanks. The study used quantitative and qualitative methods in (...) conjunction with bioethical analysis in order to determine factors that may contribute to, and threaten, trust.ResultsOur results indicate a generally high level of trust in biobanks and in medical research more broadly. Key factors that can reduce perceived trustworthiness of biobanks are commercialisation and involvement in global networking.ConclusionsWe conclude that robust ethical oversight and governance standards can both promote trust in global biobanking and ensure that this trust is warranted. (shrink)

This article proposes complementing actor-network theory (ANT) with Niklas Luhmann’s communication theory, in order to overcome one of ANT’s major shortcomings, namely, the lack of a conceptual repertoire to describe virtual processes such as sense-making. A highly problematic consequence of ANT’s actualism is that it cannot explain the differentiation of economic, legal, scientific, touristic, religious, medical, artistic, political and other qualities of actual entities, assemblages and relationships. By recasting Luhmann’s theory of functionally differentiated communication forms and sense-making (...) as dealing with different types of virtual attractors calling for actualizations in concrete assemblages, I propose a symmetrical understanding of societal differentiation processes as based on the co-production of virtual attractors and actual assemblages. (shrink)

The unprecedented development of medical informatics is constantly transforming the concept of expertise in medical sciences in a way that has far-reaching consequences for both the theory of knowledge and the philosophy of informatics. Deep medicine is based on the assumption that medical diagnosis should take into account the wide array of possible health factors involved in the diagnostic process, such as not only genome analysis alone, but also the metabolome (analysis of all body metabolites important for (...) e.g. drug-drug interactions), microbiome (i.e. analysis of all bodily microorganisms interacting with host cells) or exposome (analysis of all environmental factors triggering potentially harmful cell mutations, such as UV radiation, heavy metals, various carcinogens, etc.). Deep data analysis is of tantamount importance for personalized diagnosis but, at the same time, hardly achievable by a regular human being. However, adequately designed artificial intelligence (e.g. a deep neural network) can undeniably be of great help for finding correlations between symptoms and underlying diseases. Nowadays AI applies to nearly every aspect of medicine, starting from the data analysis of scientific literature, through the diagnostic process, to the act of communication between physicians and their patients. Medical image processing algorithms greatly enhance the chances of successful recognition of melanoma or intestinal polyps. Communication tools designed for physicians use techniques known from social media to provide users with an opportunity to consult the case with colleagues from the same discipline. Natural language processing tools significantly improve doctor-patient communication by the automation of note-taking. Is this enough to support the claim that the non-epistemic competences in medicine are becoming more and more important? Can we attribute expertise only to a person? How is medical informatics changing the way most people usually understand human-computer interactions? (shrink)

For at least the past several decades, medicine has been embroiled in a crisis concerning the nature of its professionalism. The fundamental questions that drive this ongoing crisis are primarily three. First, what is the nature of medical professionalism? Second, who are medical professionals? Third, what does medicine or these professionals profess or promise? In this paper, the professionalism crisis vis-à-vis these questions is examined and analyzed chiefly in terms of both Francis Peabody’s and Edmund Pellegrino’s writings. Based (...) on their writings, I introduce a conceptual framework for professionalism to address the crisis. In addition, I contend that to address the professionalism crisis adequately, medicine’s position within an evolving health care network must also be considered. To that end, I first discuss the genesis of the crisis in terms of the Flexner Report and especially Peabody’s response to it. Next, I explore how the crisis intensified during the twentieth century, particularly in terms of medicine’s ultimate scientification and eventual commercialization, and how Pellegrino reacted to this. I then propose a health care professionalism cycle and a care-competence cycle to provide a conceptual framework for addressing the crisis. I conclude that medicine’s position is no longer as the center of health care but rather as another node within a wider evolving health care network. And the resolution of medicine’s professionalism crisis depends on medicine’s positioning and defining itself in terms of the professionalism for each of the other professions within the health care network. (shrink)

Self-injurious behavior is associated with diverse psychiatric conditions. Sometimes, SIB is the most dominant symptom, severely restricting the psychosocial functioning and quality of life of the patients and inhibiting appropriate patient care. In severe cases, it can lead to permanent physical injuries or even death. Primary therapy consists of medical treatment and if implementable, behavioral therapy. For patients with severe SIB refractory to conventional therapy, neuromodulation can be considered as a last recourse. In scientific literature, several successful lesioning (...) and deep brain stimulation targets have been described that can indicate a common underlying neuronal pathway. The objectives of this study were to evaluate the short- and long-term clinical outcome of patients with severe, therapy refractory SIB who underwent DBS with diverse underlying psychiatric disorders and to correlate these outcomes with the activated connectivity networks. We retrospectively analyzed 10 patients with SIB who underwent DBS surgery with diverse psychiatric conditions including autism spectrum disorder, organic personality disorder after hypoxic or traumatic brain injury or Tourette syndrome. DBS targets were chosen according to the underlying disorder, patients were either stimulated in the nucleus accumbens, amygdala, posterior hypothalamus, medial thalamus or ventrolateral thalamus. Clinical outcome was measured 6 months after surgery and at long-term follow-up after 10 or more years using the Early Rehabilitation Barthel index and time of restraint. Connectivity patterns were analyzed using normative connectome. Based on previous literature the orbitofrontal cortex, superior frontal gyrus, the anterior cingulate cortex, the amygdala and the hippocampus were chosen as regions of interest. This analysis showed a significant improvement in the functionality of the patients with DBS in the short- and long-term follow-up. Good clinical outcome correlated with higher connectivity to the amygdala and hippocampus. These findings may suggest a common pathway, which can be relevant when planning a surgical procedure in patients with SIB. (shrink)

The massive expansion of information from the seventeenth century placed considerable demands on mental capacity, and individual scholars responded with strategies of memory training and note?taking that prompted, relieved or replaced memory. It has been acknowledged how cowpox inoculation (vaccination) and smallpox inoculation (variolation) stimulated new forms of record keeping and the standardization and tabulation of medical data for scientific analysis and to inform public policy. Yet the key figure in these developments, Edward Jenner, while a careful observer (...) who thought hard about the patterns he discerned, did not take good notes either from his reading or of his observations. He depended a great deal on his memory, especially a remarkable visual memory, consolidating his recollections and refining his thinking more through conversation and familiar letters than careful note?taking and writing. It was rather in the work of the practitioners who took up Jenners? writings, including some laymen and women, that we find the keeping of records of their vaccinations, in order to provide patient records and to report the results to friends, colleagues and a wider public. (shrink)

A misconception regarding the ultrastructural basis of myocardial failure has been observed in laboratory studies involving medical students and practicing physicians, in medical textbooks, and in clinical instruction of students. This misconception attributes heart failure to overextension of individual cardiac muscle fibres and their sarcomeres, resulting in a mechanically based decline in contractile force production. The basis of the misconception is a set of component misconceptions which interact in reciprocally supportive ways. The interlocking nature of the component misunderstandings (...) strengthens the overall misconception, making it difficult to undermine. A contributor to many aspects of the faulty account of heart failure is a tendency toward oversimplification of complex phenomena in learning, instruction, and scientific research. Implications for medical education are considered. (shrink)

A misconception regarding the ultrastructural basis of myocardial failure has been observed in laboratory studies involving medical students and practicing physicians, in medical textbooks, and in clinical instruction of students. This misconception attributes heart failure to overextension of individual cardiac muscle fibres and their sarcomeres, resulting in a mechanically based decline in contractile force production. The basis of the misconception is a set of component misconceptions which interact in reciprocally supportive ways. The interlocking nature of the component misunderstandings (...) strengthens the overall misconception, making it difficult to undermine. A contributor to many aspects of the faulty account of heart failure is a tendency toward oversimplification of complex phenomena in learning, instruction, and scientific research. Implications for medical education are considered. Keywords: mental models, knowledge representation, reductionism, myocardium, heart failure, physiology CiteULike Connotea Del.icio.us What's this? (shrink)

In 1991, the myotonic dystrophy gene was cloned by researchers from Cardiff, London, and elsewhere overseas. This article examines the relationships between the different research groups. It shows that the scientific collaboration on the myotonic dystrophy research was not a constant, stable feature of scientific progress but a process whereby the relationships among the scientists altered over time according to the stage of the research. This process was mediated by vested interests, by personalities, by the power differentials of (...) the groups, by the resources of the groups, by subcollaborations, and by interactions with those outside the main research network. The collaboration can be seen as a continuum, ranging from full cooperation with all parties to selected revelations to specific parties to intense competition. These cooperative and competitive relationships are seen primarily from the perspective of one research group, with whom intensive field research was conducted. (shrink)

Modern public-health initiatives in industrialized countries revolve around immunization against contagious diseases. The practice of engendering immunity against disease through disease first emerged in Western European social and medical landscapes in the eighteenth century as inoculation, based on the imported Middle Eastern practice of ‘engrafting’. By the nineteenth century, this practice had evolved into the procedure of vaccination, in the first instance directed against smallpox. Popular and academic narratives thus often categorize inoculation as a procedure from the Middle East (...) which was transformed into the truly scientific procedure of vaccination by English and French knowledge. This characterization has obscured the complex traditions of intellectual exchange between English and French networks and Middle Eastern societies in the eighteenth and nineteenth centuries. This article examines these networks in order to show how knowledge was transformed as it circulated between communities during this period. Both Western Europeans and Egyptians across different social hierarchies translated foreign or new medical practices according to the needs of their knowledge and goals, creating cycles of adoption and adaptation. This exploration of inoculation and vaccination furthers our understanding of the bilateral translation processes ingrained in the global circulation of knowledge. (shrink)

Studies of drug development have described the role of clinical trials in the selection of drug profiles. This article presents a case study of the development of hormonal drugs in the 1920s and 1930s to illustrate that clinical trials have a more extensive role than is assumed. Clinical trials are instrumental in mediating the relationships between the pharmaceutical industry, the laboratory, and the clinic, resulting in a network of actors collectively creating medical knowledge, drugs, and markets for these (...) drugs. (shrink)

For the success of their individual activities, everyone should be able to receive the latest professional information correlate its important elements of their own practical experience, ultimately, at least, to take effective additional training in special circumstances. This requires a rich and modern information field of state. The older generation of doctors is formed in the conditions that existed in the Soviet Union and the Soviet Ukraine. Then there were no unscientific or outright false materials. Unfortunately, in modern Ukraine practically (...) disappeared restrictive barriers anti-sciences to esoteric and the other discipline, which dramatically reduced the quality of our national information field and considerably complicated the activities of all medical areas and relevant sector of higher education. The information revolution has changed everything. IBM has invited 600 scientists to input a large amount of information from hundreds of modern science in an unknown volume database. Complex supercomputer and the database named "Watson". This is the first ever active integrator scientific knowledge. Watson won the race with a medical diagnosis in two groups of experts. We are confident of good prospects for scientific integrators and personalized medicine of the XXIst century. In the article the negative phenomenon widening gap between the practice of medicine and scientific discoveries is considered. It is increased the time interval between the formulation of ideas of new drugs before they spread to the network of pharmacies and hospitals. Once it had been weeks or months, now – 12-17 or more years. Earlier drugs in the form of simple chemical compounds or combination of substances from the environment were produced and used by the doctor. Nowadays everything is much more complicated that article demonstrated appeal to the information made available on the Internet for several days in mid-May 2016. It is noted that market competition in medicine and morality contradict the culture of the Ukrainian people. Therefore, the national medical education should develop the foundations of the Hippocratic Oath, traditions and use discoveries of modern science. (shrink)

We argue that artificial networks are explainable and offer a novel theory of interpretability. Two sets of conceptual questions are prominent in theoretical engagements with artificial neural networks, especially in the context of medical artificial intelligence: Are networks explainable, and if so, what does it mean to explain the output of a network? And what does it mean for a network to be interpretable? We argue that accounts of “explanation” tailored specifically to neural networks have ineffectively reinvented (...) the wheel. In response to, we show how four familiar accounts of explanation apply to neural networks as they would to any scientific phenomenon. We diagnose the confusion about explaining neural networks within the machine learning literature as an equivocation on “explainability,” “understandability” and “interpretability.” To remedy this, we distinguish between these notions, and answer by offering a theory and typology of interpretation in machine learning. Interpretation is something one does to an explanation with the aim of producing another, more understandable, explanation. As with explanation, there are various concepts and methods involved in interpretation: Total or Partial, Global or Local, and Approximative or Isomorphic. Our account of “interpretability” is consistent with uses in the machine learning literature, in keeping with the philosophy of explanation and understanding, and pays special attention to medical artificial intelligence systems. (shrink)

Animal research in the United Kingdom is regulated by the Animals Act 1986, which requires a government minister to weigh the expected suffering of animals against the expected benefits of a proposed animal research project—the “cost-benefit assessment”—before licensing the project. Research into the implementation of this legislation has been severely constrained by statutory confidentiality. This paper overcomes this hindrance by describing a critical case study based on unprecedented primary data: pig-to-primate organ transplantation conducted between 1995 and 2000. It reveals that (...) researchers and regulators significantly underestimated the adverse effects suffered by the animals involved, while overestimating the scientific and medical benefits likely to accrue. Applying dynamic policy network analysis to this case in the context of the evolution of animal research policy indicates that an elitist, policy community type network has persisted since shortly after the network’s formation in 1876. Animal research interests have repeatedly withstood pressure for change from animal protection groups because of their greater resources, structural advantages, and a culture of secrecy that facilitates an implementation gap in animal research regulation. (shrink)

This article summarizes scientific knowledge in the fields of quantum physics and medical science regarding the origin and the nature of the universe and life. The recent discoveries in the fields of biophysics, genetics, epigenetics, neuroscience, and psychosomatics describe the universe and life as highly coherent systems where information is a key factor. In this concept living systems are cognitive networks in a dynamic relationship with their environment. Health in this context is a dynamic balance in a subject (...) in which the information flows functionally. Disease is identified as a pathology of information that can be classified in a new way, considering two different codes of meaning—the semiotic and the symbolic. (shrink)

In recent years the social nature of scientific inquiry has generated considerable interest. We examine the effect of an epistemically impure agent on a community of honest truth seekers. Extending a formal model of network epistemology pioneered by Zollman, we conclude that an intransigently biased agent prevents the community from ever converging to the truth. We explore two solutions to this problem, including a novel procedure for endogenous network formation in which agents choose whom to trust. We (...) contend that our model nicely captures aspects of current problems in medical research and gesture at some morals for medical epistemology more generally. (shrink)

In spite of these efforts in the 1920s and 1930s to initiate ongoing research on contraception, the subject of birth control remained a problem of concern primarily to the social activist rather than to the research scientist or practicing physician.80 In the 1930s, as has been shown, American scientists turned to the study of other aspects of reproductive physiology, while American physicians, anxious to eliminate the moral and medical dangers of contraception, only reluctantly accepted birth control as falling within (...) their professional domain.As a result, the problem of cheap, effective, and safe contraception was not solved by these earliest attempts. Consideration of the subject was initiated afresh by private philanthropy after World War II, sparked by a new wave of interest in population studies.81 Summarizing such efforts to support research in the reproductive sciences, a recent Ford Foundation study has noted: “To initiate and sustain serious research in the reproductive sciences has required for more than half a century concerted effort by interested individuals and private organizations, mainly from outside the mainstreams of the biomedical research community.”82The early laboratory research on chemical contraception described in this paper was but one important outcome of the concerted effort made by reformers in the 1920s to eliminate a variety of social problems thought to derive from excessive fertility. Scientific arguments and expertise were employed to advocate reform as well as to define the appropriate solution to such social problems. Scientists were recruited as advocates for the movement, but they were also employed as researchers in laboratory investigations sponsored by these same reformers.Sponsors of these early laboratory studies noted the difficulty of obtaining first-class investigators.83 The routine analyses necessary for such research, as well as the traditional scientific aversion to applied problems, provide only a partial explanation for this response. The real difficulty lay in recruiting investigators to a field that had previously been taboo. Once opened up — first as socially relevant, and finally as scientifically sound — there was much interest in this area, and the appeal to researchers of the scientific issues surrounding fertility and reproduction soon surpassed that of the reforming value of birth control.A survey of the kinds of experimental investigations sponsored by birth control advocates indicates the range of physiological problems explored by contraceptive research. The most definitive work was done on the efficacy and safety of spermicides, but the potential of other contraceptive methods was also examined. Investigators attempted to develop spermatoxins that would effectively immunize women against sperm, and they also tried to elucidate the mechanism of hormonal control of reproduction. In fact, speculations about the possible hormonal manipulation of fertility were expressed at the Seventh International Birth Control Conference held in Zurich in 1930.84In the 1920s, clinical studies were undertaken to assess the effectiveness of the various birth control methods. Laboratory investigators complemented this work by screening spermicides for safety and testing for their ability to kill sperm. There were a variety of birth control preparations on the market, but no one really knew whether these were effective or even safe.85 Although the physiology of other major organ systems was well advanced, the scientific study of reproductive physiology and contraceptive technology was clearly in its infancy in this period. Routine analyses simply could not be conducted, because the fundamental research establishing baselines had not yet been done. Scientists used this fact to redirect attention to basic research on reproduction.Laboratory research on contraception indicated important unexplored areas for physiological investigation. Social activists, who had encouraged prominent scientists to become interested in both the social value and the genetic implications of birth control, found these investigators revising the goals of their research. The biologists had formed their own network and had begun to seek out funding, reformulating the justification for sponsorship of further investigations. The eugenic motivations underlying these studies, which had initially made them theoretically attractive to biologists, were gradually eroded. Concern with “human evolution” ceded its place to interest in physiological mechanisms. Crew and others began to note that the use of biological theory to justify essentially political decisions had serious limitations. Biologists had become uncomfortable with those very arguments which had originally captured their interest. Recognition of the potential political abuse wrought by applying scientific principles to society was expressed by Crew just one year after the Zurich meeting. Referring to previous assessments of the role of sex in reproduction, he generalized: “In the past the biologist has justified feudalism, Manchester Liberalism, socialism and every other type of social organization and political programme by reference to selected biological phenomena.”86 By 1932 Crew had also begun to question the biological logic of regulated breeding, and had made it clear to his American sponsor that there was no simple correspondence between the practice of birth control and the genetic improvement of the human race.87Biologists further began to recognize, however, that although the hopeful genetic solution to human problems was probably an illusion, contraception still remained one tangible means to alleviate, human misery. Some laboratory scientists, like Crew, acknowledged the applicability of their own particular skills to this problem. For a few brief years, social needs and scientific goals were mutually supportive and closely intertwined. But as laboratory researchers gained interest in the study of reproduction and established their own priorities in this field, they temporarily withdrew from the arena of debate over birth control as an important mechanism for social reform.With the rise of Hitler, the genetic arguments for birth control rapidly lost their appeal. But by that time the scientific problem of how to achieve effective contraception had entered the professional consciousness. Both physicians and scientists began to be aware of birth control as a subject within their domain of expertise, although outside the principal focus of their research. Scientific discussion of birth control permanently altered from a question of justification to a problem of method: How could one achieve reliable and safe contraception? This had been Sanger's and Dickinson's goal from the beginning. Laboratory scientists had indeed been persuaded to undertake this work; this research had in turn affected biologists' perceptions of the whole field of reproductive physiology, encouraging further study of reproductive mechanisms. The promise of new knowledge provided for continued funding of this research, despite the caution by scientists that the social benefits would not be as immediate or as far-reaching as advocates and they themselves had first argued.The activities of birth control activists and their supporting agencies, and the financial backing of private contributors and foundations, notably the Rockefeller philanthropies, provided an important new stimulus to the development of research on the biology of reproduction in the late 1920s and early 1930s. Biologists were able to claim an enlarged realm of issues for scientific study through their activities as advocates and as investigators for the birth control movement. At the same time, they promised as-yet-undiscovered possibilities for regulating human reproduction once its physiology was understood. The knowledge and control that they promised lay in understanding the whole reproductive cycle — not merely in evaluating the toxic effects of presumptive spermicides.Chemical spermicides never summoned the interest of scientists as the contraceptive pill was to do, yet that research did reinforce the widespread perceptions of scientific research as essential to social reform. Spermicide investigations focused research efforts in reproductive biology by challenging traditional taboos, defining problems for further study, and providing laboratory investigators the opportunity to assert the social and scientific value of their own skills. Crew echoed this attitude as he observed in 1934:Man has turned from the adventurous conquest of his environment to the conquest of himself. To-day is the day of biological invention, eagerly used for the control of the undesirable and the unwanted. Sex and reproduction are no longer hedged around by myth and taboo; they are no longer accepted as mysteries that defy understanding. They are matters inviting examination and explanation; they are regarded as expressions of physico-chemical forces, the nature of which is to be displayed. It is accepted that when knowledge is sufficient, control will be absolute, and, though knowledge is not yet sufficient, readers... must be persuaded to the view that this will not always be so.88The synergism between reproductive biology and social needs has been temporary and sporadic, but recurring, since the 1920s. Scientific research programs have clearly been influenced by issues raised by public debate. Nevertheless, reproductive biologists have continued to assert their own professional goals. For the most part, they have rejected problems without inherent scientific interest and have spurned applied research except as it has had a direct bearing on current research themes. This attitude, apparent among American and British investigators in the 1930s, created the intellectual context for the invention and acceptance of the technically sophisticated oral contraceptive pill. It did not foster the production and improvement of the simple, safe, effective, and cheap vaginal contraceptive desired by early birth control advocates. (shrink)

In its expansion to genomic, epidemiological and biomedical research, citizen science has been promoted as contributing to the democratisation of medical research and healthcare. At the same time, it has been criticised for reinforcing patterns of exclusion in health and biomedicine, and sometimes even creating new ones. Although citizen science has the potential to make biomedical research more inclusive, the benefits of current citizen science initiatives are not equally accessible for all people—in particular those who are resource-poor, located outside (...) of traditional networks of healthcare services, or members of minorities and marginalised groups. In view of growing public investments in participatory research endeavours, we argue that it should be considered more explicitly if, and how, citizen science could help make research more inclusive, contribute to the public good, and possibly even lead to better and more equitable healthcare. Reflecting on emerging ethical concerns for scientific conduct and best medical practice, we propose a set of relevant considerations for researchers, practitioners, bioethicists, funders and participants who seek to advance ethical practices of citizen-led health initiatives, and address profound differences in position, privilege and power in research. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Future Is Political and TransdisciplinaryAwais Aftab (bio)Philosophy, psychiatry, & psychology (PPP) is a transdisciplinary oasis, one of the few journals in mental health care that facilitate a meaningful dialogue between philosophers, psychiatrists, psychologists, and scholars from related disciplines. The fact that PPP successfully provides such a space is of no small importance, especially from my perspective as a psychiatrist. The multidisciplinary nature of the undertaking has been a (...) central aspect of the identity of the journal from the very beginning. PPP has maintained this transdisciplinary inclusive spirit over the years, and its editorial and advisory boards remain richly representative, but the challenge of ensuring continued participation of clinicians is not insubstantial. After all, the point is not token participation, but a robust and transformative interdisciplinary engagement. Clinicians have much to contribute to philosophical debates, however, such capacity for dialogue requires sustained cultivation (Aftab & Waterman, 2021), and forces in medical education have led to a situation where comparatively fewer psychiatrists have the interest or the ability to engage in such rigorous dialogue with philosophers. Philosophy of mental health has grown and specialized exponentially since the mid-90s. Keeping up with this literature is difficult even for philosophers, it is no small feat for full-time clinicians.This means that PPP and its affiliate organizations have a responsibility to take a more active role in supporting educational initiatives to ensure that future generations of psychiatric clinicians are able to contribute to philosophical debates, and that philosophy of psychiatry does not become divorced from clinical and practical concerns. My advice to clinicians based on my experience would be two-fold: first, it is essential to acquire a basic familiarity with the philosophy of psychiatry literature. Aftab and Waterman (2021) offer a sample list of reading recommendations. At the time of this writing, the International Network for Philosophy and Psychiatry is also undertaking efforts to develop curricula aimed at clinicians. Second, it is important to find ways to interact with others in the philosophy of psychiatry community. Formal avenues to do so include the annual meetings of the Association for the Advancement of Philosophy and Psychiatry and the Philosophy Special Interest Group of the Royal College of Psychiatrists, among others. There are also various online communities active on social media that many find helpful.In recent years, we have seen an unprecedented enthusiasm and support for inclusion of lived experience in mental health care. This is a welcome and much needed development, but we are only just beginning to scratch the surface of [End Page 5] how to philosophically navigate this inclusion. Frameworks such as standpoint epistemology and epistemic justice offer us starting points (Knox, 2022), but much remains to be worked out (Aftab, 2022). There are notable philosophical challenges, such as ascertaining the limits of lived experience, and the biases and errors to which it is vulnerable; the application of scientific method and philosophical criticism to lived experience; methods to resolve disagreements when different forms of lived experience contradict each other; handling discrepancies between knowledge from lived experience and knowledge from other sources be handled; and analyzing the intersection of politics of lived experience with other differentials of power. I anticipate that these topics will be of central importance to the field and to the journal in the coming years.It is also vital that philosophy of psychiatry engage with the sociopolitical dimensions of madness (Kalathil & Jones, 2016). The failure of philosophy to do so in a meaningful way has already been articulated powerfully by commentators such as Nev Jones (2022). An important aspect of acknowledging philosophy's failures in this regard comes from the notion of "elite capture," recently popularized by Olúfẹ́mi O. Táíwò (2022). It refers to how progressive philosophical ideas such as standpoint epistemology are co-opted by the "elite" to serve their own ends. Discussions on social media have already begun to point out that concepts in philosophy of psychiatry such as "epistemic injustice" show signs of elite capture by the psychiatric establishment, resulting in token participation but no systemic changes. Philosophy of psychiatry needs to tackle its own vulnerability to co-option. This will require creative forms of philosophizing and engagement with... (shrink)

This book charts the historical development of 'forensic objectivity' through an analysis of the ways in which objective knowledge of crimes, crime scenes, crime materials and criminals is achieved. Taking an interdisciplinary approach, with authors drawn from law, history, sociology and science and technology studies, this work shows how forensic objectivity is constructed through detailed crime history case studies, mainly in relation to murder, set in Scotland, England, Germany, Sweden, USA and Ireland. Starting from the mid-nineteenth century and continuing to (...) the present day, the book argues that a number of developments were crucial. These include: the beginning of crime photography, the use of diagrams and models specially constructed for the courtroom so jurors could be ‘virtual witnesses’, probabilistic models of certainty, the professionalization of medical and scientific expert witnesses and their networks, ways of measuring, recording and developing criminal records and the role of the media, particularly newspapers in reporting on crime, criminals and legal proceedings and their part in the shaping of public opinion on crime. This essential title demonstrates the ways in which forensic objectivity has become a central concept in relation to criminal justice over a period spanning 170 years. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:A New Look at Animal-to-Human Organ TransplantationCharles R. McCarthy (bio)The acute shortage of organs available for transplantation into human beings combined with a new scientific understanding of the immune systems of both humans and animals make it probable that animal-to-human solid organ transplants (xenografts) may soon be attempted at a frequency rate unknown in the past. 1 Optimism about successful animal-to-human organ transplantation is greater than at any (...) previous time. The creation of a reliable supply of animal organs appears to be technically feasible. At least five major transplant centers in the United States are currently considering plans to pursue xenotransplantation. Although, at the time of this writing, no federal guidelines prohibit animal-to-human organ transplantation, the institutions considering such programs are awaiting deliberations on the subject by the Institute of Medicine (IOM), the Food and Drug Administration (FDA), and the Department of Health and Human Services (DHHS).The demand for organs suitable for transplantation into human beings greatly exceeds the supply. According to the United Network for Organ Sharing (UNOS 1996a), approximately 44,000 patients in the United states awaited organ transplantation at the end of 1995. In 1994, more than 3,000 patients died while on the transplant waiting list, and the demand for transplantable organs increases annually (UNOS 1996b). The figures do not include the hundreds or perhaps thousands of patients who could profit from a transplant, but who do not meet the requirements of the UNOS waiting list. Even if efforts to persuade persons to donate organs are redoubled, and even if the consent to donate organs should become a legal presumption, there is little prospect of developing a sufficient supply of transplantable human organs to meet the growing demand.As technical and biological barriers to successful animal-to-human xenografts are lowered, the prospect of raising dedicated colonies of animals, genetically altered to reduce the chances that human hosts will reject organs derived from them, is being seriously discussed. 2 Such colonies do not exist at the present time. [End Page 183] However, if new techniques for animal-to-human transplantation prove successful, it is likely that animal colonies will be established to provide a ready and predictable supply of organs for transplantation to humans. Some believe that commercial investment in colonies of purpose-bred animals to serve as a source of transplantable organs is close at hand (Leventhal 1994).New drugs and new combinations of existing drugs have improved the chances of successful medical outcomes for patients who receive solid organ transplants. It is now recognized that serial application of immunosuppressive drugs can reduce the likelihood of both short- and long-term organ rejection (Makowka 1994). Improved understanding of both human and animal immune systems, insights into histocompatibility, new agents to control graft-versus-host disease, animal breeding programs for the production of transgenic animals, and improved surgical techniques have opened, as never before, the possibility of successful transfer of organs from animals to humans. Some rate the chances of good patient outcomes (usually measured in terms of time of patient survival) as high, others make more conservative predictions, but virtually all experts believe that the chances for successful human patient outcomes resulting from xenotransplantation are improved. Because many patients face immanent death unless their organs can be replaced, there can be little doubt that many humans will readily consent to xenotransplantation.History Suggests CautionDespite the advances in immunosuppression, the frequency of failure in past animal-to-human xenograft attempts should temper the optimism of the transplant community. To date, all efforts to prolong human life by implanting solid organs from animals into human recipients have failed. The first attempts at animal-to-human xenotransplantation early in the twentieth century resulted in the early death of all recipients (Neuhof 1923). More sophisticated efforts at xenotransplantation occurred in the late 1960s and early 1970s, a period when anti-rejection drugs began to make allografts more feasible. Although one human recipient of a xenograft survived for nine months (with poor quality of life), most patients died within a matter of minutes, hours, or a few days following the transplantation of organs from chimpanzees or baboons (Starzl... (shrink)

The practice and development of modern medicine requires large amounts of data, particularly in the domain of cancer. The future of personalized medicine lies neither with “genomic medicine” nor with “precision medicine”, but with “data medicine”. The establishment of this DM has required far-reaching changes, to establish four essential elements connecting patients and doctors: biobanks, databases, bioinformatic platforms and genomic platforms. The “transformation” of scientific research areas, such as genetics, bioinformatics and biostatistics, into clinical specialties has generated a new (...) vision of care. Molecular tumor boards are one response to these changes and are now providing better access to next-generation sequencing and new cancer treatments to patients with inoperable or metastatic cancers, and those for whom the usual treatment has failed. However, MTB face a crucial ethical challenge: maintaining and improving the trust of patients, clinicians, researchers and industry in academic medical centers supported by private or public funding rather than providing genetic data directly to private companies. We believe that, in this era of DM, appropriate modern digital communication networks will be required to maintain this trust and to improve the organization and effectiveness of the system. There is, therefore, a need to reconsider the form and content of informed consent documents at all academic medical centers and to introduce dynamic and electronic informed consent. (shrink)

This paper constitutes a defence of the basic philosophical enterprise of characterising concepts such as disease and health, as well as other medical concepts. I argue that these concepts play important roles, not only in medical, but also in other scientific and social contexts. In particular, medical decisions about health and diseasehood have important ethical, social and economic consequences. The role played is, however, not always a rational one. But the greater is the need for a (...) reconstruction of this network of concepts for the purpose of efficient and rational communication. (shrink)

This paper constitutes a defence of the basic philosophical enterprise of characterising concepts such as 'disease' and 'health', as well as other medical concepts. I argue that these concepts play important roles, not only in medical, but also in other scientific and social contexts. In particular, medical decisions about health and diseasehood have important ethical, social and economic consequences. The role played is, however, not always a rational one. But the greater is the need for a (...) reconstruction of this network of concepts for the purpose of efficient and rational communication. (shrink)

The practice and development of modern medicine requires large amounts of data, particularly in the domain of cancer. The future of personalized medicine lies neither with “genomic medicine” nor with “precision medicine”, but with “data medicine”. The establishment of this DM has required far-reaching changes, to establish four essential elements connecting patients and doctors: biobanks, databases, bioinformatic platforms and genomic platforms. The “transformation” of scientific research areas, such as genetics, bioinformatics and biostatistics, into clinical specialties has generated a new (...) vision of care. Molecular tumor boards are one response to these changes and are now providing better access to next-generation sequencing and new cancer treatments to patients with inoperable or metastatic cancers, and those for whom the usual treatment has failed. However, MTB face a crucial ethical challenge: maintaining and improving the trust of patients, clinicians, researchers and industry in academic medical centers supported by private or public funding rather than providing genetic data directly to private companies. We believe that, in this era of DM, appropriate modern digital communication networks will be required to maintain this trust and to improve the organization and effectiveness of the system. There is, therefore, a need to reconsider the form and content of informed consent documents at all academic medical centers and to introduce dynamic and electronic informed consent. (shrink)

Table of contentsI1 Proceedings of the 4th World Conference on Research IntegrityConcurrent Sessions:1. Countries' systems and policies to foster research integrityCS01.1 Second time around: Implementing and embedding a review of responsible conduct of research policy and practice in an Australian research-intensive universitySusan Patricia O'BrienCS01.2 Measures to promote research integrity in a university: the case of an Asian universityDanny Chan, Frederick Leung2. Examples of research integrity education programmes in different countriesCS02.1 Development of a state-run “cyber education program of research ethics” in (...) KoreaEun Jung Ko, Jin Sun Kwak, TaeHwan Gwon, Ji Min Lee, Min-Ho LeeCS02.3 Responsible conduct of research teachers’ training courses in Germany: keeping on drilling through hard boards for more RCR teachersHelga Nolte, Michael Gommel, Gerlinde Sponholz3. The research environment and policies to encourage research integrityCS03.1 Challenges and best practices in research integrity: bridging the gap between policy and practiceYordanka Krastev, Yamini Sandiran, Julia Connell, Nicky SolomonCS03.2 The Slovenian initiative for better research: from national activities to global reflectionsUrsa Opara Krasovec, Renata SribarCS03.3 Organizational climate assessments to support research integrity: background of the Survey of Organizational Research Climate and the experience with its use at Michigan State UniversityBrian C. Martinson, Carol R. Thrush, C.K. Gunsalus4. Expressions of concern and retractionsCS04.1 Proposed guidelines for retraction notices and their disseminationIvan Oransky, Adam MarcusCS04.2 Watching retractions: analysis of process and practice, with data from the Wiley retraction archivesChris Graf, Verity Warne, Edward Wates, Sue JoshuaCS04.3 An exploratory content analysis of Expressions of ConcernMiguel RoigCS04.4 An ethics researcher in the retraction processMichael Mumford5. Funders' role in fostering research integrityCS05.1 The Fonds de Recherche du Québec’s institutional rules on the responsible conduct of research: introspection in the funding agency activitiesMylène Deschênes, Catherine Olivier, Raphaëlle Dupras-LeducCS05.2 U.S. Public Health Service funds in an international setting: research integrity and complianceZoë Hammatt, Raju Tamot, Robin Parker, Cynthia Ricard, Loc Nguyen-Khoa, Sandra TitusCS05.3 Analyzing decision making of funders of public research as a case of information asymmetryKarsten Klint JensenCS05.4 Research integrity management: Empirical investigation of academia versus industrySimon Godecharle, Ben Nemery, Kris Dierickx5A: Education: For whom, how, and what?CS05A.1 Research integrity or responsible conduct of research? What do we aim for?Mickey Gjerris, Maud Marion Laird Eriksen, Jeppe Berggren HoejCS05A.2 Teaching and learning about RCR at the same time: a report on Epigeum’s RCR poll questions and other assessment activitiesNicholas H. SteneckCS05A.4 Minding the gap in research ethics education: strategies to assess and improve research competencies in community health workers/promoteresCamille Nebeker, Michael Kalichman, Elizabeth Mejia Booen, Blanca Azucena Pacheco, Rebeca Espinosa Giacinto, Sheila Castaneda6. Country examples of research reward systems and integrityCS06.1 Improving systems to promote responsible research in the Chinese Academy of SciencesDing Li, Qiong Chen, Guoli Zhu, Zhonghe SunCS06.4 Exploring the perception of research integrity amongst public health researchers in IndiaParthasarathi Ganguly, Barna Ganguly7. Education and guidance on research integrity: country differencesCS07.1 From integrity to unity: how research integrity guidance differs across universities in Europe.Noémie Aubert Bonn, Kris Dierickx, Simon GodecharleCS07.2 Can education and training develop research integrity? The spirit of the UNESCO 1974 recommendation and its updatingDaniele Bourcier, Jacques Bordé, Michèle LeducCS07.3 The education and implementation mechanisms of research ethics in Taiwan's higher education: an experience in Chinese web-based curriculum development for responsible conduct of researchChien Chou, Sophia Jui-An PanCS07.4 Educating principal investigators in Swiss research institutions: present and future perspectivesLouis Xaver Tiefenauer8. Measuring and rewarding research productivityCS08.1 Altimpact: how research integrity underpins research impactDaniel Barr, Paul TaylorCS08.2 Publication incentives: just reward or misdirection of funds?Lyn Margaret HornCS08.3 Why Socrates never charged a fee: factors contributing to challenges for research integrity and publication ethicsDeborah Poff9. Plagiarism and falsification: Behaviour and detectionCS09.1 Personality traits predict attitude towards plagiarism of self and others in biomedicine: plagiarism, yes we can?Martina Mavrinac, Gordana Brumini, Mladen PetrovečkiCS09.2 Investigating the concept of and attitudes toward plagiarism for science teachers in Brazil: any challenges for research integrity and policy?Christiane Coelho Santos, Sonia VasconcelosCS09.3 What have we learnt?: The CrossCheck Service from CrossRefRachael LammeyCS09.4 High p-values as a sign of data fabrication/falsificationChris Hartgerink, Marcel van Assen, Jelte Wicherts10. Codes for research integrity and collaborationsCS10.1 Research integrity in cross-border cooperation: a Nordic exampleHanne Silje HaugeCS10.3 Research integrity, research misconduct, and the National Science Foundation's requirement for the responsible conduct of researchAaron MankaCS10.4 A code of conduct for international scientific cooperation: human rights and research integrity in scientific collaborations with international academic and industry partnersRaffael Iturrizaga11. Countries' efforts to establish mentoring and networksCS11.1 ENRIO : a network facilitating common approaches on research integrity in EuropeNicole FoegerCS11.2 Helping junior investigators develop in a resource-limited country: a mentoring program in PeruA. Roxana Lescano, Claudio Lanata, Gissella Vasquez, Leguia Mariana, Marita Silva, Mathew Kasper, Claudia Montero, Daniel Bausch, Andres G LescanoCS11.3 Netherlands Research Integrity Network: the first six monthsFenneke Blom, Lex BouterCS11.4 A South African framework for research ethics and integrity for researchers, postgraduate students, research managers and administratorsLaetus OK Lategan12. Training and education in research integrity at an early career stageCS12.1 Research integrity in curricula for medical studentsGustavo Fitas ManaiaCS12.2 Team-based learning for training in the responsible conduct of research supports ethical decision-makingWayne T. McCormack, William L. Allen, Shane Connelly, Joshua Crites, Jeffrey Engler, Victoria Freedman, Cynthia W. Garvan, Paul Haidet, Joel Hockensmith, William McElroy, Erik Sander, Rebecca Volpe, Michael F. VerderameCS12.4 Research integrity and career prospects of junior researchersSnezana Krstic13. Systems and research environments in institutionsCS13.1 Implementing systems in research institutions to improve quality and reduce riskLouise HandyCS13.2 Creating an institutional environment that supports research integrityDebra Schaller-DemersCS13.3 Ethics and Integrity Development Grants: a mechanism to foster cultures of ethics and integrityPaul Taylor, Daniel BarrCS13.4 A culture of integrity at KU LeuvenInge Lerouge, Gerard Cielen, Liliane Schoofs14. Peer review and its role in research integrityCS14.1 Peer review research across disciplines: transdomain action in the European Cooperation in Science and Technology “New Frontiers of Peer Review ”Ana Marusic, Flaminio SquazzoniCS14.2 Using blinding to reduce bias in peer reviewDavid VauxCS14.3 How to intensify the role of reviewers to promote research integrityKhalid Al-Wazzan, Ibrahim AlorainyCS14.4 Credit where credit’s due: professionalizing and rewarding the role of peer reviewerChris Graf, Verity Warne15. Research ethics and oversight for research integrity: Does it work?CS15.1 The psychology of decision-making in research ethics governance structures: a theory of bounded rationalityNolan O'Brien, Suzanne Guerin, Philip DoddCS15.2 Investigator irregularities: iniquity, ignorance or incompetence?Frank Wells, Catherine BlewettCS15.3 Academic plagiarismFredric M. Litto16. Research integrity in EuropeCS16.1 Whose responsibility is it anyway?: A comparative analysis of core concepts and practice at European research-intensive universities to identify and develop good practices in research integrityItziar De Lecuona, Erika Löfstrom, Katrien MaesCS16.2 Research integrity guidance in European research universitiesKris Dierickx, Noémie Bonn, Simon GodecharleCS16.3 Research Integrity: processes and initiatives in Science Europe member organisationsTony Peatfield, Olivier Boehme, Science Europe Working Group on Research IntegrityCS16.4 Promoting research integrity in Italy: the experience of the Research Ethics and Bioethics Advisory Committee of the Consiglio Nazionale delle Ricerche Cinzia Caporale, Daniele Fanelli17. Training programs for research integrity at different levels of experience and seniorityCS17.1 Meaningful ways to incorporate research integrity and the responsible conduct of research into undergraduate, graduate, postdoctoral and faculty training programsJohn Carfora, Eric Strauss, William LynnCS17.2 "Recognize, respond, champion": Developing a one-day interactive workshop to increase confidence in research integrity issuesDieter De Bruyn, Bracke Nele, Katrien De Gelder, Stefanie Van der BurghtCS17.4 “Train the trainer” on cultural challenges imposed by international research integrity conversations: lessons from a projectJosé Roberto Lapa e Silva, Sonia M. R. Vasconcelos18. Research and societal responsibilityCS18.1 Promoting the societal responsibility of research as an integral part of research integrityHelene IngierdCS18.2 Social responsibility as an ethical imperative for scientists: research, education and service to societyMark FrankelCS18.3 The intertwined nature of social responsibility and hope in scienceDaniel Vasgird, Stephanie BirdCS18.4 Common barriers that impede our ability to create a culture of trustworthiness in the research communityMark Yarborough19. Publication ethicsCS19.1 The authors' forum: A proposed tool to improve practices of journal editors and promote a responsible research environmentIbrahim Alorainy, Khalid Al-WazzanCS19.2 Quantifying research integrity and its impact with text analyticsHarold GarnerCS19.3 A closer look at authorship and publication ethics of multi- and interdisciplinary teamsLisa Campo-Engelstein, Zubin Master, Elise Smith, David Resnik, Bryn Williams-JonesCS19.4 Invisibility of duplicate publications in biomedicineMario Malicki, Ana Utrobicic, Ana Marusic20. The causes of bad and wasteful research: What can we do?CS20.1 From countries to individuals: unravelling the causes of bias and misconduct with multilevel meta-meta-analysisDaniele Fanelli, John PA IoannidisCS20.2 Reducing research waste by integrating systems of oversight and regulationGerben ter Riet, Tom Walley, Lex Marius BouterCS20.3 What are the determinants of selective reporting?: The example of palliative care for non-cancer conditionsJenny van der Steen, Lex BouterCS20.4 Perceptions of plagiarism, self-plagiarism and redundancy in research: preliminary results from a national survey of Brazilian PhDsSonia Vasconcelos, Martha Sorenson, Francisco Prosdocimi, Hatisaburo Masuda, Edson Watanabe, José Carlos Pinto, Marisa Palácios, José Lapa e Silva, Jacqueline Leta, Adalberto Vieyra, André Pinto, Mauricio Sant’Ana, Rosemary Shinkai21. Are there country-specific elements of misconduct?CS21.1 The battle with plagiarism in Russian science: latest developmentsBoris YudinCS21.2 Researchers between ethics and misconduct: A French survey on social representations of misconduct and ethical standards within the scientific communityEtienne Vergès, Anne-Sophie Brun-Wauthier, Géraldine VialCS21.3 Experience from different ways of dealing with research misconduct and promoting research integrity in some Nordic countriesTorkild VintherCS21.4 Are there specifics in German research misconduct and the ways to cope with it?Volker Bähr, Charité22. Research integrity teaching programmes and their challengesCS22.1 Faculty mentors and research integrityMichael Kalichman, Dena PlemmonsCS22.2 Training the next generation of scientists to use principles of research quality assurance to improve data integrity and reliabilityRebecca Lynn Davies, Katrina LaubeCS22.3 Fostering research integrity in a culturally-diverse environmentCynthia Scheopner, John GallandCS22.4 Towards a standard retraction formHervé Maisonneuve, Evelyne Decullier23. Commercial research and integrityCS23.1 The will to commercialize: matters of concern in the cultural economy of return-on-investment researchBrian NobleCS23.2 Quality in drug discovery data reporting: a mission impossible?Anja Gilis, David J. Gallacher, Tom Lavrijssen, Malwitz David, Malini Dasgupta, Hans MolsCS23.3 Instituting a research integrity policy in the context of semi-private-sector funding: an example in the field of occupational health and safetyPaul-Emile Boileau24. The interface of publication ethics and institutional policiesCS24.1 The open access ethical paradox in an open government effortTony SavardCS24.2 How journals and institutions can work together to promote responsible conductEric MahCS24.3 Improving cooperation between journals and research institutions in research integrity casesElizabeth Wager, Sabine Kleinert25. Reproducibility of research and retractionsCS25.1 Promoting transparency in publications to reduce irreproducibilityVeronique Kiermer, Andrew Hufton, Melanie ClyneCS25.2 Retraction notices issued for publications by Latin American authors: what lessons can we learn?Sonia Vasconcelos, Renan Moritz Almeida, Aldo Fontes-Pereira, Fernanda Catelani, Karina RochaCS25.3 A preliminary report of the findings from the Reproducibility Project: Cancer biologyElizabeth Iorns, William Gunn26. Research integrity and specific country initiativesCS26.1 Promoting research integrity at CNRS, FranceMichèle Leduc, Lucienne LetellierCS26.2 In pursuit of compliance: is the tail wagging the dog?Cornelia MalherbeCS26.3 Newly established research integrity policies and practices: oversight systems of Japanese research universitiesTakehito Kamata27. Responsible conduct of research and country guidelinesCS27.1 Incentives or guidelines? Promoting responsible research communication through economic incentives or ethical guidelines?Vidar EnebakkCS27.3 Responsible conduct of research: a view from CanadaLynn PenrodCS27.4 The Danish Code of Conduct for Research Integrity: a national initiative to promote research integrity in DenmarkThomas Nørgaard, Charlotte Elverdam28. Behaviour, trust and honestyCS28.1 The reasons behind non-ethical behaviour in academiaYves FassinCS28.2 The psychological profile of the dishonest scholarCynthia FekkenCS28.3 Considering the implications of Dan Ariely’s keynote speech at the 3rd World Conference on Research Integrity in MontréalJamal Adam, Melissa S. AndersonCS28.4 Two large surveys on psychologists’ views on peer review and replicationJelte WichertsBrett Buttliere29. Reporting and publication bias and how to overcome itCS29.1 Data sharing: Experience at two open-access general medical journalsTrish GrovesCS29.2 Overcoming publication bias and selective reporting: completing the published recordDaniel ShanahanCS29.3 The EQUATOR Network: promoting responsible reporting of health research studiesIveta Simera, Shona Kirtley, Eleana Villanueva, Caroline Struthers, Angela MacCarthy, Douglas Altman30. The research environment and its implications for integrityCS30.1 Ranking of scientists: the Russian experienceElena GrebenshchikovaCS30.4 From cradle to grave: research integrity, research misconduct and cultural shiftsBronwyn Greene, Ted RohrPARTNER SYMPOSIAPartner Symposium AOrganized by EQUATOR Network, Enhancing the Quality and Transparency of Health ResearchP1 Can we trust the medical research literature?: Poor reporting and its consequencesIveta SimeraP2 What can BioMed Central do to improve published research?Daniel Shanahan, Stephanie HarrimanP3 What can a "traditional" journal do to improve published research?Trish GrovesP4 Promoting good reporting practice for reliable and usable research papers: EQUATOR Network, reporting guidelines and other initiativesCaroline StruthersPartner Symposium COrganized by ENRIO, the European Network of Research Integrity OfficersP5 Transparency and independence in research integrity investigations in EuropeKrista Varantola, Helga Nolte, Ursa Opara, Torkild Vinther, Elizabeth Wager, Thomas NørgaardPartner Symposium DOrganized by IEEE, the Institute of Electrical and Electronics EngineersRe-educating our author community: IEEE's approach to bibliometric manipulation, plagiarism, and other inappropriate practicesP6 Dealing with plagiarism in the connected world: An Institute of Electrical and Electronics Engineers perspectiveJon RokneP7 Should evaluation of raises, promotion, and research proposals be tied to bibliometric indictors? What the Institute of Electrical and Electronics Engineers is doing to answer this questionGianluca SettiP8 Recommended practices to ensure conference content qualityGordon MacPhersonPartner Symposium EOrganized by the Committee on Freedom and Responsibility in the Conduct of Science of ICSU, the International Council for ScienceResearch assessment and quality in science: perspectives from international science and policy organisationsP9 Challenges for science and the problems of assessing researchEllen HazelkornP10 Research assessment and science policy developmentCarthage SmithP11 Research integrity in South Africa: the value of procedures and processes to global positioningRobert H. McLaughlinP12 Rewards, careers and integrity: perspectives of young scientists from around the worldTatiana Duque MartinsPartner Symposium FOrganized by the Online Resource Center for Ethics Education in Engineering and Science / Center for Engineering, Ethics, and Society of the National Academy of EngineeringP13 Research misconduct: conceptions and policy solutionsTetsuya Tanimoto, Nicholas Steneck, Daniele Fanelli, Ragnvald Kalleberg, Tajammul HusseinPartner Symposium HOrganized by ORI, the Office of Research Integrity; Universitas 21; and the Asia Pacific Research Integrity NetworkP14 International integrity networks: working together to ensure research integrityPing Sun, Ovid Tzeng, Krista Varantola, Susan ZimmermanPartner Symposium IOrganized by COPE, the Committee on Publication EthicsPublication without borders: Ethical challenges in a globalized worldP15 Authorship: credit and responsibility, including issues in large and interdisciplinary studiesRosemary ShinkaiPartner Symposium JOrganized by CITI, the Cooperative Institutional Training InitiativeExperiences on research integrity educational programs in Colombia, Costa Rica and PeruP16 Experiences in PeruRoxana LescanoP17 Experiences in Costa RicaElizabeth HeitmanP18 Experiences in ColumbiaMaria Andrea Rocio del Pilar Contreras NietoPoster Session B: Education, training, promotion and policyPT.01 The missing role of journal editors in promoting responsible researchIbrahim Alorainy, Khalid Al-WazzanPT.02 Honorary authorship in Taiwan: why and who should be in charge?Chien Chou, Sophia Jui-An PanPT.03 Authorship and citation manipulation in academic researchEric Fong, Al WilhitePT.04 Open peer review of research submission at medical journals: experience at BMJ Open and The BMJTrish GrovesPT.05 Exercising authorship: claiming rewards, practicing integrityDésirée Motta-RothPT.07 Medical scientists' views on publication culture: a focus group studyJoeri Tijdink, Yvo SmuldersPoster Session B: Education, training, promotion and policyPT.09 Ethical challenges in post-graduate supervisionLaetus OK LateganPT.10 The effects of viable ethics instruction on international studentsMichael Mumford, Logan Steele, Logan Watts, James Johnson, Shane Connelly, Lee WilliamsPT.11 Does language reflect the quality of research?Gerben ter Riet, Sufia Amini, Lotty Hooft, Halil KilicogluPT.12 Integrity complaints as a strategic tool in policy decision conflictsJanneke van Seters, Herman Eijsackers, Fons Voragen, Akke van der Zijpp and Frans BromPoster Session C: Ethics and integrity intersectionsPT.14 Regulations of informed consent: university-supported research processes and pitfalls in implementationBadaruddin Abbasi, Naif Nasser AlmasoudPT.15 A review of equipoise as a requirement in clinical trialsAdri LabuschagnePT.16 The Research Ethics Library: online resource for research ethics educationJohanne Severinsen, Espen EnghPT.17 Research integrity: the view from King Abdulaziz City for Science and TechnologyDaham Ismail AlaniPT. 18 Meeting global challenges in high-impact publications and research integrity: the case of the Malaysian Palm Oil BoardHJ. Kamaruzaman JusoffPT.19 University faculty perceptions of research practices and misconductAnita Gordon, Helen C. HartonPoster Session D: International perspectivesPT.21 The Commission for Scientific Integrity as a response to research fraudDieter De Bruyn, Stefanie Van der BurghtPT. 22 Are notions of the responsible conduct of research associated with compliance with requirements for research on humans in different disciplinary traditions in Brazil?Karina de Albuquerque Rocha, Sonia Maria Ramos de VasconcelosPT.23 Creating an environment that promotes research integrity: an institutional model of Malawi Liverpool Welcome TrustLimbanazo MatandikaPT.24 How do science policies in Brazil influence user-engaged ecological research?Aline Carolina de Oliveira Machado Prata, Mark William NeffPoster Session E: Perspectives on misconductPT.26 What “causes” scientific misconduct?: Testing major hypotheses by comparing corrected and retracted papersDaniele Fanelli, Rodrigo Costas, Vincent LarivièrePT.27 Perception of academic plagiarism among dentistry studentsDouglas Leonardo Gomes Filho, Diego Oliveira GuedesPT. 28 a few bad apples?: Prevalence, patterns and attitudes towards scientific misconduct among doctoral students at a German university hospitalVolker Bähr, Niklas Keller, Markus Feufel, Nikolas OffenhauserPT. 29 Analysis of retraction notices published by BioMed CentralMaria K. Kowalczuk, Elizabeth C. MoylanPT.31 "He did it" doesn't work: data security, incidents and partnersKatie SpeanburgPoster Session F: Views from the disciplinesPT.32 Robust procedures: a key to generating quality results in drug discoveryMalini Dasgupta, Mariusz Lubomirski, Tom Lavrijssen, David Malwitz, David Gallacher, Anja GillisPT.33 Health promotion: criteria for the design and the integrity of a research projectMaria Betânia de Freitas Marques, Laressa Lima Amâncio, Raphaela Dias Fernandes, Oliveira Patrocínio, and Cláudia Maria Correia Borges RechPT.34 Integrity of academic work from the perspective of students graduating in pharmacy: a brief research studyMaria Betânia de Freitas Marques, Cláudia Maria Correia Borges Rech, Adriana Nascimento SousaPT.35 Research integrity promotion in the Epidemiology and Health Services, the journal of the Brazilian Unified Health SystemLeila Posenato GarciaPT.36 When are clinical trials registered? An analysis of prospective versus retrospective registration of clinical trials published in the BioMed Central series, UKStephanie Harriman, Jigisha PatelPT.37 Maximizing welfare while promoting innovation in drug developmentFarida LadaOther posters that will be displayed but not presented orally:PT.38 Geoethics and the debate on research integrity in geosciencesGiuseppe Di Capua, Silvia PeppoloniPT.39 Introducing the Professionalism and Integrity in Research Program James M. DuBois, John Chibnall, Jillon Van der WallPT.40 Validation of the professional decision-making in research measureJames M. DuBois, John Chibnall, Jillon Van der Wall, Raymond TaitPT.41 General guidelines for research ethicsJacob HolenPT. 42 A national forum for research ethicsAdele Flakke Johannessen, Torunn EllefsenPT.43 Evaluation of integrity in coursework: an approach from the perspective of the higher education professorClaudia Rech, Adriana Sousa, Maria Betânia de Freitas MarquesPT.44 Principles of geoethics and research integrity applied to the European Multidisciplinary Seafloor and Water Column Observatory, a large-scale European environmental research infrastructureSilvia Peppoloni, Giuseppe Di Capua, Laura BeranzoliF1 Focus track on improving research systems: the role of fundersPaulo S.L. Beirão, Susan ZimmermanF2 Focus track on improving research systems: the role of countriesSabine Kleinert, Ana MarusicF3 Focus track on improving research systems: the role of institutionsMelissa S. Anderson, Lex Bouter. (shrink)

BackgroundIn 2009, Dr. Paolo Zamboni proposed chronic cerebrospinal venous insufficiency (CCSVI) as a possible cause of multiple sclerosis (MS). Although his theory and the associated treatment (“liberation therapy”) received little more than passing interest in the international scientific and medical communities, his ideas became the source of tremendous public and political tension in Canada. The story moved rapidly from mainstream media to social networking sites. CCSVI and liberation therapy swiftly garnered support among patients and triggered remarkable and relentless (...) advocacy efforts. Policy makers have responded in a variety of ways to the public’s call for action.DiscussionWe present three different perspectives on this evolving story, that of a health journalist who played a key role in the media coverage of this issue, that of a health law and policy scholar who has closely observed the unfolding public policy developments across the country, and that of a medical ethicist who sits on an expert panel convened by the MS Society of Canada and the Canadian Institutes of Health Research to assess the evidence as it emerges.SummaryThis story raises important questions about resource allocation and priority setting in scientific research and science policy. The growing power of social media represents a new level of citizen engagement and advocacy, and emphasizes the importance of open debate about the basis on which such policy choices are made. It also highlights the different ways evidence may be understood, valued and utilized by various stakeholders and further emphasizes calls to improve science communication so as to support balanced and informed decision-making. (shrink)

The pathogenic microbe came to be a widely acknowledged “scientific fact” by the end of the 19th century. Taking the transfer of bacteriological knowledge to Warsaw as an example, this article contributes to understanding the question of how knowledge of bacteria was stabilized outside of its original place of production. Conceiving bacteriological knowledge as a laboratory practice it describes the techniques of mobilizing the “laboratory network” this practice depended on. The case of the Polish medical student Odo (...) Bujwid transporting Robert Koch’s and Louis Pasteur’s laboratory networks to Warsaw will be analyzed. Bujwid used literary and visual inscriptions to make these laboratory networks immutably mobile in Bruno Latour’s sense. But he also had to transport three-dimensional objects central to the networks’ functioning back to Warsaw. Personal exchange was, furthermore, essential to their successful transportation to the Polish kingdom. Next to Bujwid’s efforts to transform the laboratory networks into immutable mobiles, the analysis will extend the focus to mutable mobiles as well and will thus show that the successful stabilization of bacteriological knowledge in Warsaw was due not only to the immutability of its laboratory network but to its flexibility and elasticity as well. (shrink)

What is 'legal' about bioethics? What are the ideas and artefacts that bioethics encompasses, and how are they related to law? What is the role of law in bioethics? In this work, Calvin Ho attempts to address these questions in the context of the governance of human pluripotent stem cell research. In essence, he argues that the hybridization of law, through processes, devices and techniques of juridification, has helped to constitute bioethics as a public sphere and an emergent civic epistemology. (...) Drawing on his multi-sited ethnographic fieldwork and on Actor-Network-Theory, Ho explains how the law has, through bioethics, contributed to the scientific and public understanding of human pluripotent stem cell research and its artefacts, particularly the embryo and human-animal combinations. Although the focus of his work is on bioethical developments in Singapore over a period of more than 15 years, parallel developments in key jurisdictions (especially the United States of America and the United Kingdom) and in international science policy are also evaluated. It is through appreciating how it has progressed that bioethics will be better able to engage with future challenges presented by advances in human embryo research and gene editing techniques, among others. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:“Foucault for Psychoanalysis”Monique David-Ménard’s Kind of BluePenelope DeutscherFoucault for psychoanalysis? This is a paradoxical question. Foucault also produced a critique of psychoanalysis, aiming to show that sexuality was not an a-temporal reality, nor a truth eventually discovered by Freud. It was a discursive formation, one among others.—Eloge des hasards dans la vie sexuelle, 172.To the philosophers..A practicing psychoanalyst and a professor of philosophy, Monique David-Ménard extends a singular proposition (...) to philosophers. She is not the first philosopher to engage the assumptions of psychoanalysis, but hers is a particularly idiosyncratic suggestion for how to think with the analyst’s clinical work, intimate and alien. She has proposed we do so in the company of Gilles Deleuze,1 and most recently, in Eloge des hasards dans la vie sexuelle (2011) has extended her invitation to think with the clinic through an ingenious reading of Michel Foucault.As Eloge opens, David-Ménard’s reading of Foucault is far from the scene. Early in the work, we are asked to think with a practice, seemingly in a different register. An analyst finds herself accused of being an obstacle, of opposing the analysand’s wishes in life. In this context, we are asked to think about the blue of a painting in the room where the analysand waits (David-Ménard 2011, 34). [End Page 111]Given the criticisms of psychoanalysis elaborated in the work of Foucault and Deleuze, one might have expected these philosophers to be considered in Eloge in that stead.2 Or, one could imagine Foucault playing a role because of his genealogical analysis of the formation of the Oedipus complex.3Two years after the publication of Deleuze’s Anti-Oedipus, Foucault had, in Abnormal, characterized the desiring space of the family as stimulated in a capillary network of individualizing normalization (Foucault 2003, 257), linked by medicalized and expert concern of which parents became the auxiliaries. They are charged, and charge themselves, with the goals of family health, of preservative and defensive good parenting, and with the conduct of the child’s conduct. Foucault describes the pre-twentieth century emergence of lay and expert preoccupation with the dangers of childhood masturbation. This produces an environment whose intensive scrutiny involves a close “folding of... parents’ bodies over... children’s bodies” (ibid., 265) in a saturated, hermetic environment stimulating oedipalized desire. This means one can offer a genealogical account of the conditions of formation of the latter. These include a responsibilization of parents, who control for the presence of abnormal sex, advised by new experts (lay, medical, pseudo-scientific) in collective crusades for health and life. Thus there is differentiation through minor gradations of abnormality. Even the specificity of the architectural spaces in which scrutiny is directed plays a role in the hollowing out of the child’s putatively interior psychic-sexual life, the intense object of “palpating” interest (Foucault 1978, 45) in new apparatuses of knowledge-power (Foucault 2003, 327).Because he presents this as the context in which the “nuclear and substantial family was gradually constituted” (Foucault 2003, 264), along with its oedipal configurations of desire, Foucault emphasizes the contingency of both. Psychoanalysis would be, from his perspective, willfully indifferent to these or other possibilities for genealogical analysis of the apparatus of power, knowledge, and the body, of the repeating configurations of desire that are its special domain of expertise,4 and the emergent forms of authority associated with the analyst, described in History of Madness (Foucault 2009) and in Psychiatric Power (Foucault 2006).Perhaps we’d expect to see David-Ménard, the psychoanalyst, addressing these accounts, but they are neither repudiated in Eloge, nor extensively discussed. Far from rejecting a genealogical analysis of psychoanalysis, she promotes its promise. But this is so in a particular sense.Necessity and repetitionA particular patient might fear being “mad like her mother.” She might fear being denied, trapped, or annihilated (David-Ménard 2011, 33). She might [End Page 112] consider herself somehow denied a lover. She might seem to be denying herself a lover. There’s a degree of necessity in all these variants. Perhaps these... (shrink)

Biobanks are essential tools for furthering a broad range of medical research areas. However, despite the plethora of national and international laws and guidelines which apply to them, the access and sharing policies of biobanks are only sparsely addressed by regulatory bodies. The ‘give and take’ process of biosample sharing is largely left up to biobank stakeholders themselves to oversee; it is therefore both in stakeholders' power, and in their interest, to ensure that sample accessibility is fair. This is (...) an important step in motivating researchers to collaborate and pool samples, and is crucial to fostering trust in the absence of universally accepted standard practices. To date, little attention has been paid to how fairness considerations affect scientific material sharing, and no empirical research has been carried out to determine the role that fairness plays in collaborative studies. In order to begin to gain understanding in this area, we interviewed 36 biobank stakeholders currently working in Switzerland, focusing on their perceptions of current and optimal fair sharing practices. Our findings reveal that fairness is an important feature of exchange situations for these stakeholders, and that they have well-formed notions about the practical elements of fair sample access, although ideas about the concept of fairness itself are vague. In order to support efforts to network biobanks, attention should be paid to this issue to reassure all involved that they are getting a fair share in their cooperative efforts. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Introduction to the Special Section on Psychedelics Research and TreatmentDominic SistiAgainst a backdrop of post-pandemic malaise, diseases of despair, and a fragmented mental health care system, psychedelics have enjoyed a resurgence of interest as powerful psychotherapeutic agents and as catalysts of personal growth. The true power of these substances—some of which are considered sacramental by Indigenous peoples—has been shrouded for half a century by cultural mythology, political propaganda, and (...) misuse. From about 1940 to 1970, psychedelics including psilocybin and LSD were studied and used by clinicians to treat a range of psychiatric disorders from alcoholism and depression in adults to "autistic schizophrenia" in children.In June 1971, the Nixon administration's racist and illiberal War on Drugs inaugurated what was essentially a total ban on psychedelics. Society was robbed of half a century of scientific progress, and one can only speculate how differently our society might now function, and how many people might have been spared the trauma of mental illness and incarceration. Thankfully, it appears the time has arrived for psychedelic medicines to be decriminalized and included again in the pharmacopeia.In June 2023, a group of psychedelic researchers, therapists, bioethicists, Indigenous scholars, and advocates met at the Banbury Conference Center at Cold Spring Harbor Laboratory. There, this interdisciplinary group discussed several pressing ethical issues in psychedelics research and treatment that continue to [End Page 114] challenge the field. The aim of this meeting was to develop a bioethical framework for the use of psychedelics in mainstream medical settings. That is, how should psychedelics be employed responsibly by everyday clinicians, including psychiatrists, psychologists, social workers, and other behavioral health-care providers? This special section offers a sampling of three topics in psychedelic bioethics raised by the Banbury group, several of whom appear as coauthors.In our first paper, Logan Neitzke-Spruill and colleagues offer an overview of explanatory models describing the therapeutic mechanisms of psychedelic substances and how each of these models generates unique ethical quandaries. Starting from molecular biology and moving to neural circuitry and networks, neurobiological models now propel contemporary scientific research into psychedelics. Knowing how these substances work on a molecular level may offer promising ways forward in the development of new molecules designed to treat serious mental illnesses and other neurologic conditions. Perhaps neuroplastic mechanisms will be harnessed to develop new therapies without necessitating a psychedelic trip—a controversial premise discussed in our third paper, by Katherine Cheung, Brian Earp, and David Yaden.Such "neuroreductionism" risks ignoring the subjective psychological and spiritual experiences of patients that appear to be pivotal in psychedelic-assisted therapy, often described as mystical and utterly transformative. At the psychological level, these substances engender a kind of vulnerability and suggestibility requiring clear ethical standards to ensure patients' psychological and physical safety. And so too, practitioners will need structural and cultural competency to recognize the spiritual or moral values that inspire patient reactions during and after their psychedelic experiences. Ethically informed psychedelic practitioners will have to navigate between disciplinary silos and explanatory models. One practical upshot is the open question of how best to train psychedelic practitioners who hold this broad set of competencies.To that end, well-trained practitioners will need to be able to disclose in some way the transformative properties of psychedelics to prepare patients for their experiences. But how does one describe the ineffable? This raises the question of how or if it is possible for patients to truly consent to the transformative experience elicited by psychedelics, often described as one of the most important experiences of a person's life. The experience might stimulate significant emotional healing, or it might be horrifying. This sounds like a problem uniquely attached to psychedelics: after all, most pharmaceuticals don't trigger changes in one's fundamental moral values, life choices, and commitments, nor are they intended to. Yet, Brent Kious, Andrew Peterson, and Amy McGuire challenge the view that the psychedelic experience is uniquely transformative and impervious to the disclosure requirements of informed consent, a bedrock of bioethics. Ultimately, the writers show how consent is possible even if the experiences are dramatically different from most medical interventions, endorsing a practical view of consent [End... (shrink)

With the increased acceptance of complementary and alternative medicine (CAM) within society, new research reflects deeper folk health histories beyond formal medical spaces. The contested relationships between formal and informal medicine have deep provenance and as scientific medicine began to professionalise in the 19th century, lay health knowledges were simultaneously absorbed and disempowered (Porter 1997). In particular, the ‘medical gaze’ and the responses of informal medicine to this gaze were framed around themes of power, regulation, authenticity and (...) narrative reputation. These responses were emplaced and mobile; enacted within multiple settings by multiple agents and structures over time. The work is drawn from secondary material from Ireland, which identify more indigenous narratives of health and act as potential sources for medical humanities. While assumptions have been made as to the place of folk-medicine being essentially rural, evidence will be presented which shows a more complex network of health beliefs and practices. The narratives of informal practice and folk-medicine drawn from evidence from Ireland point to more fluid and hybrid relations with formal medicine and suggest that the complementary nature of the two models reflected wider cultural debates and models of belief (Del Casino Jnr., Health & Place 10:59-73, 2004). (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Living Organ Donors’ Stories: (Unmet) Expectations about Informed Consent, Outcomes, and CareElisa J. Gordon, Symposium EditorKeywordsEthics, informed consent, kidney, liver, living donor, narrative, transplantationLiving donor organ transplantation has become standard treatment for patients with end-stage kidney or end-stage liver disease. Live donors comprised approximately 5,769 (34%) and 247 (4%) of all kidney and liver transplants in 2011, respectively (OPTN/UNOS). The reasons why people donate, the perception that donating does (...) not entail a decision per se, and the attendant fears and anxieties living donors feel about donating, have all been previously well investigated (Lennerling, Forsberg, Meyer, & Nyberg, 2004; Papachristou, Walter, Frommer, & Klapp, 2010). But much less is known about how donors experienced the overall donation process including the donor evaluation, preparation, appreciation of risks, decision-making, informed consent, post-operative, recovery processes, and the impact of donating on all aspects of their life, from their point of view. Thus, a narrative approach is essential for gaining insights into these less well known phenomena.There is good reason to remain concerned about the safety and ethical basis of living donation considering that living donors undergo serious health risks for no direct medical benefit to themselves (Ethics Committee of the Transplantation Society, 2004; Laird, 2012; Neergaard, 2011; Ratner & Sandoval, 2010; Shelton, 2011). The situation raises serious ethical questions specifically about nonmaleficence and informed consent, and more broadly about using people as a means to an end. The absence of long-term information may not undermine a willing donor’s commitment to save a loved one’s life, but is certainly cause for concern among transplant clinicians who want to be sure to disclose information that may be material for donors in order to provide adequate informed consent. In other words, the disjuncture between what transplant clinicians find important to disclose to donors and what prospective donors need to know—which follows along the lines of what Elliot Mishler referred to as the ‘voice of medicine’ versus the ‘voice of the lifeworld’(1984)—seems to complicate donors’ preparation for donation. Donors’ stories are important for addressing these concerns by identifying risks that typically do not get reported in the scientific literature—perhaps owing to a different [End Page 1] conceptualization of what should be construed as noteworthy risks—as well as by demonstrating how personal situations can enhance or detract from the experience overall.This issue of Narrative Inquiry in Bioethics (NIB) affords a unique entrée into both the often heard and unheard stories of living organ donors. A set of topical areas were presented for the authors’ consideration that relate to the donation process in general and the informed consent process more specifically: whether donors were prepared to donate; comprehended what they were told; could have understood the process better, as well as, the impact of donation on health, employment, finances, and personal relationships (Table 1). When soliciting donors’ stories, every effort was made to include a full range of experiences—both good and bad—from a variety of donors: kidney donation, liver donation, adult-to-adult and adult-to-child donation, related, unrelated, directed and anonymous (also known as ‘altruistic’ or ‘good Samaritan’ donors), paired chain exchange, and list exchange (Table 2)—in order to present a balanced perspective on live donation. Additionally, this issue includes a full breadth of stories about the donor experience, ranging from positive to mixed to negative (Table 3). While donors were given tremendous leeway in what stories they told, they were asked to focus their narratives on the lesser known dimensions of donation—the experience of it. While additional stories from liver donors would have helped to underscore common concerns among liver donors, we only received a few. Some of the donors are themselves health care professionals, active in the United Network for Organ Sharing (UNOS) or their local OPO, or have leveraged their experiences to help others by becoming a donor buddy or donor advocate. Given that we received more stories than Click for larger view View full resolutionTable 1.Topical areas to address[End Page 2] Click for larger view View full resolutionTable 2.Forms of Living Donation Click for larger view View... (shrink)

Agenda 21 of United Nations demands better situation of ecology, economy, health, etc. in all countries. An evaluation of scientific contributions in international congresses of fundamental anthropological sciences (philosophy, psychology, psychosomatics, physiology, genito-urology, radio-oncology, etc.) demonstratesevidence of large discrepancies in the participation not only of developing and industrial countries, but also between the last ones themselves. Low degree of research and education leads to low degree of economy, health, ecology, etc. [Lit.: Neu, Michailov et al.: Physiology in Agenda 21. (...) Proc. Int. Un. Physiol. Sci. San Francisco, Faseb J. 19/5, A1355, 2005; Agenda 21 in Psychol. 28th Int. Congr. Psychol. Beijing, 1028.62/3028.96, 2004]. CONCEPTION: The science is leading in the social and economic development of humanity, but the misuse of science causes disastrous repercussions (ecological and self-destruction). New models for scientific education, beginning with philosophy, followed by philosophical, pedagogical, medical, theological anthropology, and research are necessary tosupport Agenda 21 and prevent misuse of science. According to proposals on foundation of experimental schools (Immanuel Kant) and international universities (Bertrand Russell) the International Academy of Science/ICSD supports these ideas and initiated the creation of first (interdisciplinary) International Faculties forAnthropology as paradigm for humanization, higher effectiveness and pluralistic internationalization of science, leading to better education ("Erziehung und Ausbildung") and research in all countries, i.e. decrease of the gap between industrial and developing countries. CONCLUSION: Foundation of international institutes for general (philosophy, pedagogy, medicine) as well as for special anthropology (theology, informatics-logic-mathematics, culture, biology, (bio-) physics/chemistry) in context of an integralanthropology via networks of national ones from selected countries of Africa, America, Asia, Australia, Europe can permit the necessary implication of philosophy in education of anthropological sciences as well as research and education (post graduate) by common international research and educational programmes, lecturers, students, etc. in one country. This project needs political and financial support by UNO, European Union, governments, banks, industries to support the education of a homo sanus, humanus et spiritualis for the future humanity. (shrink)

This volume maps the areas of ethical concern in the debate regarding the governance of genetic information, and suggests alternative ethical frameworks and models of regulation in order to inform its restructuring. Genetic governance is at the heart of medical and scientific developments, and is connected to global exploitation, issues of commodification, commercialisation and ownership, the concepts of property and intellectual property and concerns about individual and communal identity. Thus the decisions that are made in the next few (...) years about appropriate models of genetic governance will have knock-on effects for other areas of governance. In short the final answer to 'Who Decides?' in the context of genetic governance will fundamentally shape the ethical constructs of individuals and their networks and relationships in the public sphere. (shrink)

BackgroundMedical education is currently more considerate about the human dimension. The present qualitative study aimed to explain the experiences of clinical professors with regard to humanism in clinical education in Iran.MethodsThis mixed methods study had two phases, a quanitative phase of scientometrics and a qualitative phase of a content analysis. In the scientometrics phase, Ravar PreMap and VOSviewer software programs were utilized for plotting the conceptual networks. The networks were analyzed at the micro-level based on centrality indices. The conceptual (...) class='Hi'>network was plotted and the prominent topics in clinical education were identified using co-word analysis. In the second qualitative phase on the topic, based on the scientometrics phase, semi-structured interviews were conducted with clinical professors. The interviews were transcribed verbatim and analyzed.ResultsOn the basis of the analysis of titles, abstracts, and keywords of the retrieved articles on clinical education from ISI Web of Science, Scopus, and PubMed, 1412 keywords were extracted. After the refining process, 356 keywords with 6741 relations remained. Upon plotting the conceptual network, 19 conceptual clusters related to clinical education were obtained. Then, micro-level network analysis indicated that the keyword humanism with the frequency of 137 had the highest rate, closeness, and betweenness. Moreover, from the interview data analysis, two themes of “intertwined nature of the human spirit in clinical education” and “humanistic behavior of professors in clinical education” were extracted.ConclusionAs a part of the educational culture, humanistic values must be intertwined with the medical education curriculum. In this regard, humanism and clinical reasoning are the two major clusters of clinical teaching; moreover, altruism and adherence to humanistic values, and scientific qualification are other main pillars that should be considered as the criteria for the selection of clinical professors and medical students. (shrink)

With the ultrahigh-speed, large-scale development of tourism and the increasing frequency, intensity, and scope of extreme natural hazards in the context of climate warming, tourism has entered a high-risk era. Based on the central urban area within the outer ring of Shanghai as the research area and the tourism attraction as the research object, this paper takes the flood scenario simulation combined with GIS network analysis to evaluate the spatial accessibility of the emergency response of urban key public service (...) departments under current and future river flood scenarios in different return periods. The results of the study show that, under the current and future flood scenarios, the submergence range is mainly distributed within 2 ∼ 3 km along the banks of the Huangpu River, and it tends to increase from north to south; there are 6, 9, and 21 tourism attractions in the emergency blind area under the once-in-a-century floods in 2010, 2030, and 2050 and 98, 105, and 112 tourism attractions in the emergency blind area under the once-in-a-millennium floods in 2010, 2030, and 2050, respectively; in the flood scene, local road traffic in the inundation area is interrupted by water, and 120 first aid cannot get or be delayed to some tourist attraction ; and in 2030, under the normal and flooding scenarios, 120 first aid in the downtown area of Shanghai has the fastest route to tourism attractions according to the speed of S1, S2, S3, and S4. The flooding intensity, road traffic conditions, and the number and location of key public service departments jointly determine the service scope and response time of medical emergency in urban floods. Since the flood control area of the central city in Shanghai is mainly distributed in the 2 ∼ 3 km area on both banks of the Huangpu River, the impact of flood on the emergency medical service in the entire central city is limited, mainly in some hospitals in the riverside area, where 120 emergency vehicles are unable or delayed to reach some tourism attractions. The research indicates that the quantitative assessment method of spatial accessibility of the emergency response under flood scenario simulation has important scientific value and practical significance, which can provide decision-making basis for emergency management of tourism in China’s urban flood disaster. (shrink)

This article focuses on the emergence and development of gerontology in communist Bulgaria, looking at the interplay of various circumstances: scientific and political, national and international. We ask if an apparently ideologically neutral field of knowledge such as gerontology may have had some intrinsic qualities imbued by the regimes of knowledge production under a communist regime. More specifically, we ask to what extent and in which ways the production of such specialized, putatively universal knowledge could be ideologically driven and/or (...) politically controlled. To this end, we unpack the ideological, political, institutional, and epistemic circumstances that may have affected the emergence, the institutionalization, and the paradigm of Bulgarian gerontology. We focus in on the social actors, both individuals and organizations, and the roles they played in the process, as well as on international networking and the uses of international contacts and agendas. (shrink)