The medical profession is not to blame for the limitations of the biomedical model with which it is often associated; the biology upon which that model is built is incomplete and bears some of the responsibility. Some of the more fundamental aspects of biological theory which are currently missing from the biomedical model need to be introduced in order to help provide a better description of the integrated biology involved. AIMS AND OBJECTIVES: By considering the (...) biological nature of the individual human being as an organism, this article introduces a brief sketch of a new biomedical model of the individual as a biological entity. Core to this model is the idea of individual survival in the 'struggle for existence' introduced 150 years ago by Charles Darwin in 'On the Origin of Species'. (shrink)

This paper offers a critical analysis of the strategic use of biomedical models of mental illness as a means of challenging stigma. Likening mental illnesses to physical illnesses reinforces notions that persons with mental illnesses are of a fundamentally “different kind,” entrenches misperceptions that they are inherently more violent, and promotes overreliance on diagnostic labeling and pharmaceutical treatments. I conclude that too much has been invested in the claim that the body is somehow morally neutral, and that advocates of (...) this approach oversimplify, misrepresent, and underestimate the personal and social costs of physical illness. (shrink)

The word stigma comes from ancient Greece, and was initially used in reference to signs or symbols physically cut into or burned onto the bodies of those deemed to be of an inferior status. It was a marking of one's tarnished and flawed character. Today, stigma is more often attached to one's social standing, personality traits, or psychological makeup. "People are no longer physically branded; instead they are societally labeled—as poor, as criminal, homosexual, mentally ill, and so on. These labels (...) influence public perceptions and behavior and lead to devaluation and denigration of those who are so labeled" (Wahl 1999, 11–12).The modern usage of the term stigma and contemporary focus on the concept as a topic of .. (shrink)

This paper examines the origin and the development of the mechanistic model of the human body and health in terms of Max Weber's theory of rationalization. It is argued that the development of Western scientific medicine is a part of the broad process of rationalization that began in sixteenth century Europe as a result of the Reformation. The development of the mechanistic view of the human body in Western medicine is consistent with the ideas of calculability, predictability, and control (...) — the major tenets of the process of rationalization as described by Weber. In recent years, however, the limitations of the mechanistic model have been the topic of many discussions. George Engel, a leading advocate of general systems theory, is one of the leading proponents of a new medical model which includes the general quality of life, clean environment, and psychological, or spiritual stability of life. The paper concludes with consideration of the potential of Engel's proposed new model in the context of the current state of rationalization in modern industrialized society. (shrink)

In “Prozac or Prosaic Diaries?”, Ginger Hoffman and Jennifer Hansen examine gendered messages in popular depression memoirs, using narrative self-constitution theory to emphasize the damaging effects such messages can have on women readers. In doing so, they bring a welcome feminist perspective to matters of mental health, as well as raising thought-provoking questions about depression memoirs, a genre that can have a far-reaching impact on public opinions about mental illness. Overall, Hoffman and Hansen do an excellent job of explaining the (...) philosophical concepts that form a basis for their arguments. This work allows even relative newcomers to philosophy to follow along, co-inspecting the... (shrink)

Educational Theory, Volume 71, Issue 4, Page 435-454, August 2021.

Empirical evidence suggests that while people hold the capacity to control their data in high regard, they increasingly experience a loss of control over their data in the online world. The capacity to exert control over the generation and flow of personal information is a fundamental premise to important values such as autonomy, privacy, and trust. In healthcare and clinical research this capacity is generally achieved indirectly, by agreeing to specific conditions of informational exposure. Such conditions can be openly stated (...) in informed consent documents or be implicit in the norms of confidentiality that govern the relationships of patients and healthcare professionals. However, with medicine becoming a data-intense enterprise, informed consent and medical confidentiality, as mechanisms of control, are put under pressure. In this paper we explore emerging models of informational control in data-intense healthcare and clinical research, which can compensate for the limitations of currently available instruments. More specifically, we discuss three approaches that hold promise in increasing individual control: the emergence of data portability rights as means to control data access, new mechanisms of informed consent as tools to control data use, and finally, new participatory governance schemes that allow individuals to control their data through direct involvement in data governance. We conclude by suggesting that, despite the impression that biomedical big data diminish individual control, the synergistic effect of new data management models can in fact improve it. (shrink)

Biomedical researchers claim there is significant biomedical information about humans which can be discovered only through experiments on intact animal systems (AMA p. 2). Although epidemiological studies, computer simulations, clinical investigation, and cell and tissue cultures have become important weapons in the biomedical scientists' arsenal, these are primarily "adjuncts to the use of animals in research" (Sigma Xi p. 76). Controlled laboratory experiments are the core of the scientific enterprise. Biomedical researchers claim these should be conducted (...) on intact biological systems, whole animals. By observing the effects of various stimuli in non-human animals, we can form legitimate expectations about the likely effects of these stimuli in humans. Perhaps more importantly, we can understand the biomedical condition's causal mechanisms. (shrink)

In recent years, the biomedical field has witnessed the emergence of novel tools and modelling techniques driven by the rise of the so-called Big Data. In this paper, we address the issue of predictability in biomedical Big Data models of cancer patients, with the aim of determining the extent to which computationally driven predictions can be implemented by medical doctors in their clinical practice. We show that for a specific class of approaches, called k-Nearest Neighbour algorithms, the ability (...) to draw predictive inferences relies on a geometrical, or topological, notion of similarity encoded in a well-defined metric, which determines how close the characteristics of distinct patients are on average. We then discuss the conditions under which the relevant models can yield reliable and trustworthy predictive outcomes. (shrink)

This article provides an overview of recent contributions to the debate on the ethical use of previously collected biobank samples, as well as a country report about how this issue has been regulated in Spain by means of the new Biomedical Research Act, enacted in the summer of 2007. By contrasting the Spanish legal situation with the wider discourse of international bioethics, we identify and discuss a general trend moving from the traditional requirements of informed consent towards new models (...) more favourable to research in a post‐genomic context. (shrink)

The web is being loaded daily with a huge volume of data, mainly unstructured textual data, which increases the need for information extraction and NLP systems significantly. Named-entity recognition task is a key step towards efficiently understanding text data and saving time and effort. Being a widely used language globally, English is taking over most of the research conducted in this field, especially in the biomedical domain. Unlike other languages, Arabic suffers from lack of resources. This work presents a (...) BERT-based model to identify biomedical named entities in the Arabic text data that investigates the effectiveness of pretraining a monolingual BERT model with a small-scale biomedical dataset on enhancing the model understanding of Arabic biomedical text. The model performance was compared with two state-of-the-art models, and it outperformed both models with 85% F1-score. (shrink)

This article provides an overview of recent contributions to the debate on the ethical use of previously collected biobank samples, as well as a country report about how this issue has been regulated in Spain by means of the new Biomedical Research Act, enacted in the summer of 2007. By contrasting the Spanish legal situation with the wider discourse of international bioethics, we identify and discuss a general trend moving from the traditional requirements of informed consent towards new models (...) more favourable to research in a post‐genomic context. (shrink)

Background The work of Research Ethics Boards (REBs), especially when involving genetics research and biobanks, has become more challenging with the growth of biotechnology and biomedical research. Some REBs have even rejected research projects where the use of a biobank with coded samples was an integral part of the study, the greatest fear being the lack of participant protection and uncontrolled use of biological samples or related genetic data. The risks of discrimination and stigmatization are a recurrent issue. In (...) light of the increasing interest in biomedical research and the resulting benefits to the health of participants, it is imperative that practical solutions be found to the problems associated with the management of biobanks: namely, protecting the integrity of the research participants, as well as guaranteeing the security and confidentiality of the participant's information. Methods We aimed to devise a practical and efficient model for the management of biobanks in biomedical research where a medical archivist plays the pivotal role as a data-protection officer. The model had to reduce the burden placed on REBs responsible for the evaluation of genetics projects and, at the same time, maximize the protection of research participants. Results The proposed model includes the following: 1) a means of protecting the information in biobanks, 2) offers ways to provide follow-up information requested about the participants, 3) protects the participant's confidentiality and 4) adequately deals with the ethical issues at stake in biobanking. Conclusion Until a governmental governance body is established in Quebec to guarantee the protection of research participants and establish harmonized guidelines for the management of biobanks in medical research, it is definitely up to REBs to find solutions that the present lack of guidelines poses. The model presented in this article offers a practical solution on a day-to-day basis for REBs, as well as researchers by promoting an archivist to a pivotal role in the process. It assures protection of all participants who altruistically donate their samples to generate and improve knowledge for better diagnosis and medical treatment. (shrink)

This article provides an overview of recent contributions to the debate on the ethical use of previously collected biobank samples, as well as a country report about how this issue has been regulated in Spain by means of the new Biomedical Research Act, enacted in the summer of 2007. By contrasting the Spanish legal situation with the wider discourse of international bioethics, we identify and discuss a general trend moving from the traditional requirements of informed consent towards new models (...) more favourable to research in a post-genomic context. (shrink)

An examination of the early history of Nobel Committee deliberations, coupled with a survey of discoveries for which prizes have been awarded to date – and, equally revealing, discoveries for which prizes have not been awarded – reveals a pattern. This pattern suggests that Committee members may have internalized the received, biomedical model and conferred awards in accord with the physicalistic premises that ground this model. I consider the prospect of a paradigm change in medical science and (...) the possible repercussions of such a change on the distribution of Nobel prizes within the domain of physiology or medicine. For expository purposes, I contrast a model based on a science of pathophysiology with one based on a science of pathopsychophysiology. I propose a means whereby members might minimize the potentially blinding effects of model-dependence and come to evaluate medical discoveries from an inter-model rather than an exclusively intra-model perspective. By bringing to light questions rarely asked and proposing answers, I seek to open a dialogue and furnish a vehicle by which the putative delimiting effects of model-dependence might be overcome. (shrink)

Designing, building, and experimenting with physical simulation models are central problem‐solving practices in the engineering sciences. Model‐based simulation is an epistemic activity that includes exploration, generation and testing of hypotheses, explanation, and inference. This paper argues that to interpret and understand how these simulation models function in creating knowledge and technologies requires construing problem solving as accomplished by a researcher–artifact system. It draws on and further develops the framework of “distributed cognition” to interpret data collected in ethnographic and cognitive‐historical (...) studies of two biomedical engineering research laboratories, and articulates the notion of distributed model‐based cognition to answer the question posed in the title. (shrink)

In this open access book, the Community of Practice led by the VPH Institute, the Avicenna Alliance, and the In Silico World consortium has brought together 138 experts in In Silico Trials working in academia, the medical industry, regulatory bodies, hospitals, and consulting firms. Through a consensus process, these experts produced the first attempt to define some Good Simulation Practices on how to develop, evaluate, and use In Silico Trials. Good Simulation Practice constitutes an indispensable guide for anyone who is (...) planning to engage at any title with In Silico Trials. (shrink)

Skin is a comparatively accessible organ possessing many conserved regulatory and signaling pathways, drawing researchers from varied fields toward its study. Hair follicle (HF) biology in particular has expanded rapidly over the preceding decade, helping to shape and develop scientific knowledge across diverse areas of biomedical research, beyond the skin. The hope in compiling this review is to inspire more researchers to utilize the HF as an instructive biological model, bringing with them fresh perspectives and experience from differing (...) fields of study. The authors also wish to further motivate seasoned hair researchers to explore the further reaches of their understanding and the discoveries yet to be made. For this reason, the authors have endeavored to collate an eclectic mix of some of the most thought‐provoking and scientifically intriguing articles associated with the field of HF research, published in the preceding two years. (shrink)

The ways in which other animal species can be informative about human biology are not exhausted by the traditional picture of the animal model. In this paper, I propose to distinguish two roles which laboratory organisms can have in biomedical research. In the more traditional case, organisms act as surrogates for human beings, and as such are expected to be more manageable replicas of humans. However, animal models can inform us about human biology in a much less straightforward (...) way, by being used as measuring devices—what I call their instrumental role. I first characterize this role and provide criteria for it, before illustrating it with some examples from biomedical research, especially cancer research. In such an instrumental role, phenotypes are not expected to phenocopy human phenomena, but instead have the purely instrumental value of detecting or measuring differences. I argue that the instrumental role is more prevalent than might first be suspected, and that some characteristics of contemporary biomedical research are increasingly shifting the use of laboratory organisms to the instrumental role. Finally, in light of the distinction proposed, I discuss the meaning of the expression “animal model”. (shrink)

Animal models play a crucial role in fundamental and medical research. Progress in the fields of drug discovery, regenerative medicine and cancer research among others are heavily dependent on in vivo models to validate in vitro observations, and develop new therapeutic approaches. However, conventional rodent and large animal experiments face ethical, practical and technical issues that limit their usage. The chick embryo represents an accessible and economical in vivo model, which has long been used in developmental biology, gene expression (...) analysis and loss/gain of function experiments. It is also an established model for tissue/cell transplantation, and because of its lack of immune system in early development, the chick embryo is increasingly recognised as a model of choice for mammalian biology with new applications for stem cell and cancer research. Here, we review novel applications of the chick embryo model, and discuss future developments of this in vivo model for biomedical research. (shrink)

The primary aim of biomedical research is to discover and develop new knowledge to advance human medicine. Frequently a ‘mouse model’ is taken to be a necessary step towards understanding a disease, biological mechanism or intervention. We argue for caution with respect to the mouse model: theoretical reasons, meta-analyses of empirical data, and viable alternatives all support a more restricted use of animals in laboratories than is current practice. On its own terms, a utilitarian scientific justification for (...) using animals in biomedical research converges more closely with welfarist claims than is usually recognised. (shrink)

Instead of arguing for a specific animal model, Striedter will review the history and philosophy of animal models in biomedical research, examining their various advantages and limitations.

Amid increasing demands from students and the public, universities have recently reinvigorated their efforts to increase the number of faculty from underrepresented populations. Although a myriad of piecemeal programs targeting individual recruitment and development have been piloted at several institutions, overall growth in faculty diversity remains almost negligible and highly localized. To bring about genuine change, we hypothesize a consortia approach that links individuals to hiring opportunities within a state university system might be more effective. Here we present a case (...) study describing the progress of the NSF-funded Alliances for Graduate Education and the Professoriate PROMISE Academy Alliance, a consortium within the University System of Maryland collaborating to develop, implement, self-study, evaluate, and disseminate a unique postdoc-to-faculty conversion model in the biomedical sciences. The initiative centers on diversifying faculty across five institutions in the USM, including teaching-focused institutions, comprehensive universities, research institutions, and professional schools. Components of this approach include enhanced recruiting and hiring practices to attract outstanding postdoctoral scholars from underrepresented backgrounds, multi-institutional networking and professional development, and facilitated processes to transition postdocs into tenure-track positions at their postdoctoral institution or another institution in the state system. This model is distinct from more deficit-based approaches because it goes beyond focusing on building the individual’s skills to enter the professoriate. This program restructures the traditionally short-term nature of postdoctoral employment and incorporates a pathway to a tenure-track professorship at the same institution or within the same statewide system where the postdoc is trained. This multi-institutional model leverages collaboration and distinct institutional strengths to create cross-institutional support, advocacy, and policy. Importantly, it uses a decentralized financial structure that makes this approach distinctly replicable. Recognizing the immediate need for more collaborative approaches to diversify faculty and a lack of literature about such approaches, this case study describes the development of, and potential benefits of, a state university system, as well as the qualitative lessons learned from self-study, internal evaluation, external evaluation, and NSF site visits. The AGEP PROMISE Academy can serve as a model for replication at other university systems hoping to diversify their faculty. (shrink)

RESUMEN El presente trabajo está dirigido a exponer elementos inherentes al modelo de superación profesional del tecnólogo de la salud en laboratorio clínico desde la integración ciencias básicas biomédicas-laboratorio. Entre los métodos teóricos empleados, el analítico-sintético permitió la determinación de los fundamentos epistemológicos y praxiológicos del proceso de superación, el inductivo-deductivo posibilitó la determinación de las categorías que surgen en el proceso investigativo, el sistémico estructural funcional para fundamentar el carácter de sistema del modelo y la modelación con la finalidad (...) de construirlo. Se concluye que se establecen como subsistemas del modelo, la proyección profesional de las ciencias básicas biomédicas, la contextualización profesional de la integración ciencias básicas biomédicas-laboratorio y la valoración contextual de la integración en el proceso de superación, lo que explica el proceso de superación del tecnólogo de la salud en laboratorio clínico. ABSTRACT This paper aims at setting out elements inherent to the health technologist in clinical laboratory’s professional training model from the integration of basic biomedical-laboratory sciences. Among the theoretical methods used, analysis-synthesis allowed establishing the epistemological and praxeological basis of the training process; the inductive-deductive method made it possible to determine the categories that result from the research process and the systemic-structural-functional method was used to support the system-like nature of the model and modelling with the end of building it. In conclusion, subsystems of the model are established: basic biomedical sciences professionals’ aims, professional conceptualization of the integration of basic biomedical-laboratory sciences and the contextual assessment of integration in the training process, which expounds the training process of the health technologist in clinical laboratory. (shrink)

We begin at the beginning, with an outline of Aristotle’s views on ontology and with a discussion of the influence of these views on Linnaeus. We move from there to consider the data standardization initiatives launched in the 19th century, and then turn to investigate how the idea of computational ontologies developed in the AI and knowledge representation communities in the closing decades of the 20th century. We show how aspects of this idea, particularly those relating to the use of (...) the term 'concept' in ontology development, influenced SNOMED CT and other medical terminologies. Against this background we then show how the Foundational Model of Anatomy, the Gene Ontology, Basic Formal Ontology and other OBO Foundry ontologies came into existence and discuss their role in the development of contemporary biomedical informatics. (shrink)

Educational institutions have a responsibility not only to provide a solid theoretical background on scientific phenomena, but to also frame them within the wider social context and highlight their numerous ethical implications. It is fundamental that tomorrow’s scientists be encouraged to develop an informed and critical approach towards scientific issues that, as in the case of animal experimentation, bring undeniable advantages to our society while carrying highly controversial moral implications. However, despite the considerable social and scientific relevance of the use (...) of animal models in biomedical research, there is a scarcity of scholarly literature exploring the topic from a pedagogical standpoint. The case study presented in this paper aims to investigate the effectiveness of role play simulation in promoting critical understanding of the use of animal models in biomedical research and its ethical implications. A simulation was set up in which first year undergraduate students took the role of delegates to a conference purportedly organised by the United Nations Ethics Office. The simulation included two electronic voting sessions, an open debate, and a keynote lecture. Post-session feedback indicated that most students found the simulation more engaging than a conventional lecture. A comparison of self-assessment questionnaires compiled at the start and at the end of the session indicated that students’ understanding of, and confidence in, the topic of animal experimentation had considerably increased after taking part in the simulation. (shrink)

Educational institutions have a responsibility not only to provide a solid theoretical background on scientific phenomena, but to also frame them within the wider social context and highlight their numerous ethical implications. It is fundamental that tomorrow’s scientists be encouraged to develop an informed and critical approach towards scientific issues that, as in the case of animal experimentation, bring undeniable advantages to our society while carrying highly controversial moral implications. However, despite the considerable social and scientific relevance of the use (...) of animal models in biomedical research, there is a scarcity of scholarly literature exploring the topic from a pedagogical standpoint. The case study presented in this paper aims to investigate the effectiveness of role play simulation in promoting critical understanding of the use of animal models in biomedical research and its ethical implications. A simulation was set up in which first year undergraduate students took the role of delegates to a conference purportedly organised by the United Nations Ethics Office. The simulation included two electronic voting sessions, an open debate, and a keynote lecture. Post-session feedback indicated that most students found the simulation more engaging than a conventional lecture. A comparison of self-assessment questionnaires compiled at the start and at the end of the session indicated that students’ understanding of, and confidence in, the topic of animal experimentation had considerably increased after taking part in the simulation. (shrink)

Two essential periods may be identified in the early stages of the history of vitamin D-resistant rickets. The first was the period during which a very well known deficiency disease, rickets, acquired a scientific status: this required the development of unifying principles to confer upon the newly developing science of pathology a doctrine without which it would have been condemned to remain a collection of unrelated facts with very little practical application. One first such unifying principle was provided by the (...) notion of hygiene; while the blanket explanations provided by this notion alone were much too general to enable rickets to achieve scientific status, it did point out the need to look for specific external causes for the disease and to examine the life-style and dietary habits of the patients. The second phase of the conceptualization of the disease was the assumption of a specific cause — that is, using concepts developed in the area of infectious diseases. This was made possible by fundamental similarities between deficiency and infectious diseases, in spite of their apparent differences. Both types of illness have some of the characteristics of what Georges Canguilhem calls the ontological representation of disease as opposed to dysharmonic representations, which primarily concern the endocrine diseases. It is precisely this shift from one to the other manner of perceiving ill health that enabled the identification of the vitamin D-resistant rickets. Conceptualization of the notion of vitamin D resistancy required that the conditions causing the disease be looked for within the organism rather than outside it; this was thus the first time that endocrine concepts were applied to studying the physiology of vitamin D.The history of resistant rickets therefore represents an interesting model for understanding the growth of biomedical knowledge. It allows the development of a number of more general ideas on the question of the relationship between biology and medicine and on the thorny problem of specificity in medical thinking. As far as this topic is concerned it can be seen that there was an ongoing exchange between medical and biological thinking during the initial period up until 1937, and that one could deny any such specificity in medical thinking during this same period. Albright, for example, used human diseases as spontaneously produced models for experimental biology. It was also more feasible for an experimental biologist to administer toxic doses than for a clinician to do so.What, then, if any, is the place of the specificity of medical thinking in this history? The fact that medicine is characterized not only by it ccognitive content78 but also by its final aim, which is to restore health, makes it necessary to take factors other than objective knowledge into consideration. This is particularly evident in two aspects of medicine, therapeutics and nosology, and in approaching the notion of pathological individuality.Therapeutic activity has a largely empirical approach. Many drugs, such as cod-liver oil, were discovered empirically. Treatment often in the past, and still now, has proceeded by trial and error, upon no established theoretical basis. At this level the relationship between biology and medicine is roughly comparable to that between science and technology79 \3- that is, it is impossible to reduce either therapeutics or technical activities to the simple application of basic science. In this sense, the application of vitamin D to vitamin-resistant rickets is quite typical. Further-more, in the case studied here, the therapeutic activity heralds a definite breaking away from the medicatrix naturae of conventional medicine dating back to ancient times, and it embodies a new concept of the organism and of disease: no longer can the diseased organism be thought of as merely having a perturbed equilibrium requiring restoration by means of a natural style of medicine. On the contrary, vitamin D resistance is an obstacle that indicates profound biological dysfunction, to be rectified only by means of an extremely aggressive and therefore dangerous therapy. The therapy thus serves to reveal the severity of the dysfunction, thereby leading inevitably to conceptual innovation. This sheds light on the theoretical innovations of which the therapeutic activity is capable.Therapeutic activity is also influenced by notions of health and illness, normal and pathological states, none of which may be determined entirely objectively. For example, the term healing as used by Albright in the case of resistant rickets that he described may be discussed in this light.Nosology, or the classification of diseases, depends largely on the description of clinical syndromes, which are themselves mainly based on subjective elements (discomfort, disability, or the extent of a patient's suffering). The advent of pathological anatomy at the beginning of the nineteenth century disrupted classification by introducing the concept of localized anatomical lesions81-and, hence, an element of material objectivity \3- into nosology. Radiological examination further complicated matters by enabling the equivalent of an autopsy on living matter. Lastly, biological examination complicated nosology by showing that biological anomalies may exist in human beings without necessarily leading to a pathological condition. Medical thinking can choose to combine all these elements to describe a disease, but can also separate them and retain only a few, or a single one, according to requirements - as did Albright.The notion of biological and pathological individuality is fundamental to the development of medical thinking. Whatever its theoretical origin, medical thinking has since ancient times incorporated the idea that each individual reacts differently to the same treatment and his own specific pathological tendencies. I mentioned earlier that in the history of vitamin D-resistant rickets the notion of rachitic tendency reflected this type of thinking. After 1937, this history progressed by successively separating new individual entities, affecting smaller and smaller groups of individuals in each case. In other words, the need to understand and to define individual illness more closely required the development of new concepts and the construction of new individual categories of disease linking these concepts to older clinical, radiological, and biochemical elements. (shrink)

An examination of the early history of Nobel Committee deliberations, coupled with a survey of discoveries for which prizes have been awarded to date – and, equally revealing, discoveries for which prizes have not been awarded – reveals a pattern. This pattern suggests that Committee members may have internalized the received, biomedical model and conferred awards in accord with the physicalistic premises that ground this model. I consider the prospect of a paradigm change in medical science and (...) the possible repercussions of such a change on the distribution of Nobel prizes “within the domain of physiology or medicine.” For expository purposes, I contrast a model based on a science of pathophysiology with one based on a science of pathopsychophysiology. I propose a means whereby members might minimize the potentially blinding effects of model-dependence and come to evaluate medical discoveries from an inter-model rather than an exclusively intra-model perspective. By bringing to light questions rarely asked and proposing answers, I seek to open a dialogue and furnish a vehicle by which the putative delimiting effects of model-dependence might be overcome. (shrink)

Biomedical research has a strong impact on a country’s scientific-technological and socioeconomic development. It can make a significant contribution at three different levels: promotion of public health; the exchange of knowledge within the scientific community; and economic/ financial profitability. Africa only attracts ~3.3% of the world’s clinical research. This small proportion is due to, among several factors, the absence of two fundamental aspects: specific robust legislation and capacity for regulatory and ethical evaluation. There are five Portuguese- speaking African countries (...) – Angola, Cabo Verde, Guinea-Bissau, Mozambique and São Tomé and Príncipe. Despite presenting different degrees of clinical research development, these countries show a common serious insufficiency in the minimum conditions necessary for hosting, collaborating or leading biomedical research projects. These countries are also excluded from the support of international organisations for capacity building because of the language barrier. The Biomedical Ethics and Regulatory Capacity Building Partnership for Portuguese-Speaking African Countries project has developed methods to build capacity and partnership through research on national law, comparisons with international standards and by issuing recommendations at a national level. Through collaborative intensive training, trainees are taught to become educators at a national level. This, in turn, creates a sustainable impact at country level. BERC-Luso is a pioneering project, owing to a combination of innovative features. The partnership project: was developed exclusively in Portuguese; involves a large number of African countries, and national and international institutions; has been further enhanced by the diversity and complementarity of its action plans; and has also benefited from a broad participatory methodology based on resolution of recipients’ problems by the recipients themselves. It thus stands out as a model for similar future projects. (shrink)

While representation learning techniques have shown great promise in application to a number of different NLP tasks, they have had little impact on the problem of ontology matching. Unlike past work that has focused on feature engineering, we present a novel representation learning approach that is tailored to the ontology matching task. Our approach is based on embedding ontological terms in a high-dimensional Euclidean space. This embedding is derived on the basis of a novel phrase retrofitting strategy through which semantic (...) similarity information becomes inscribed onto fields of pre-trained word vectors. The resulting framework also incorporates a novel outlier detection mechanism based on a denoising autoencoder that is shown to improve performance. An ontology matching system derived using the proposed framework achieved an F-score of 94% on an alignment scenario involving the Adult Mouse Anatomical Dictionary and the Foundational Model of Anatomy ontology (FMA) as targets. This compares favorably with the best performing systems on the Ontology Alignment Evaluation Initiative anatomy challenge. We performed additional experiments on aligning FMA to NCI Thesaurus and to SNOMED CT based on a reference alignment extracted from the UMLS Metathesaurus. Our system obtained overall F-scores of 93.2% and 89.2% for these experiments, thus achieving state-of-the-art results. (shrink)

A model for ethical problem solving -- Values in health and illness -- What is the source of moral judgments? -- Benefiting the patient and others : duty to do good and avoid harm -- Justice : allocation of health resources -- Autonomy -- Veracity : honesty with patients -- Fidelity : promise-keeping, loyalty to patients, and impaired professionals -- Avoidance of killing -- Abortion, sterilization, and contraception -- Genetics, birth, and the biological revolution -- Mental health and behavior (...) control -- Confidentiality : ethical disclosure of medical information -- Organ transplants -- Health insurance, health system planning, and rationing -- Experimentation on human subjects -- Consent and the right to refuse treatment -- Death and dying. (shrink)

The categories of health and disease/illness are conceptualized from the perspective of the philosophy of medicine. Philosophical contradictions are revealed, which, fueling the debate between naturalism and normativism, prevent biomedicine from developing a single satisfactory understanding of these categories. The theoretical and practical consequences of such biomedicine features as pathocentrism, identification of health with complete well-being, dichotomy of health and disease in the absence of a clear criterion for their differentiation are analyzed. The role of humanistic approaches to the medicine (...) rehumanization is investigated with a focus on their balanced view of health and disease/illness, attentive to the fundamental vulnerability of human nature. (shrink)

Over the last three quarters of a century, international guidelines and regulations have undergone significant changes in how children are problematised as participants in biomedical research. While early guidelines enacted children as vulnerable subjects with diminished autonomy and in need of special protection, beginning in the early 2000s, international regulatory frameworks defined the paediatric population as vulnerable due to unaddressed public health needs. More recently, ethical recommendations have promoted the active engagement of minors as research partners. In this paper, (...) I adopt a post-structuralist approach to policy analysis to examine deep-seated assumptions and presuppositions underlying the changes in the problematisation of children as biomedical research participants over time. While biomedical research ethics focuses on the autonomy and vulnerability of minors, ethical guidelines are situated in specific sociocultural contexts, shaped, among other things, by contingent public health needs and changing conceptions of the value of research and science for society. In the process, I demonstrate the challenge of moving away from an approach that in taking adults as the model overshadows the complexity of children’s lived experiences as well as their personal, cultural, and social lives. The lack of acknowledgement of this complexity makes children vulnerable to epistemic injustice, which is particularly crucial to address in public involvement initiatives. (shrink)

Definition of the problem Biomedical research based on big data offers immense benefits. Large multisite research that integrates large amounts of personal health data, especially genomic and genetic data, might contribute to a more personalized medicine. This type of research requires the transfer and storage of highly sensitive data, which raises the question of how to protect data subjects against data harm, such as privacy breach, disempowerment, disenfranchisement, and exploitation. As a result, there is a trade-off between reaping the (...) benefits of big-data-based biomedical research and protecting data subjects’ right to informational privacy. Arguments Blockchain technologies are often discussed as a technical fix for the abovementioned trade-off due to their specific features, namely data provenance, decentralization, immutability, and access and governance system. However, implementing blockchain technologies in biomedical research also raises questions regarding consent, legal frameworks, and workflow integration. Hence, accompanying measures, which I call enablers, are necessary to unleash the potential of blockchain technologies. These enablers are innovative models of consent, data ownership models, and regulatory models. Conclusion Blockchain technologies as a technical fix alone is insufficient to resolve the aforementioned trade-off. Combining this technical fix with the enablers outlined above might be the best way to perform biomedical research based on big data and at the same time protect the informational privacy of data subjects. (shrink)