Reflecting biomedical, technological and environmental issues of our modern society. The recent “Forum” section in Poiesis & Praxis Content Type Journal Article Category Editorial Pages 1-2 DOI 10.1007/s10202-011-0097-7 Authors Stephan Lingner, Europäische Akademie zur Erforschung von Folgen wissenschaftlich-technischer Entwicklungen Bad Neuenahr-Ahrweiler GmbH, Wilhelmstr. 56, 53474 Bad Neuenahr-Ahrweiler, Germany Journal Poiesis & Praxis: International Journal of Technology Assessment and Ethics of Science Online ISSN 1615-6617 Print ISSN 1615-6609 Journal Volume Volume 8 Journal Issue Volume 8, Number 1.

In this comparative analysis of twelve focus groups conducted in Austria, France, and the Netherlands, we investigate how lay people come to terms with two biomedical technologies. Using the term ‘‘technopolitical culture,’’ we aim to show that the ways in which technosciences are interwoven with a specific society frame how citizens build their individual and collective positions toward them. We investigate how the focus group participants conceptualized organ transplantation and genetic testing, their perceptions of individual agency in relation to (...) the two technologies and to more collective forms of acting and governing, and also their understanding of the two technologies’ relationship to broader societal value systems. Against the background of the sustained political effort to build common European values, we suggest that more fine-grained attention toward the culturally embedded differences in coming to terms with biomedical technologies is needed. (shrink)

Research has consistently revealed gender differences in attitudes toward science and technology. One explanation is that women are more personally affected by particular technologies, so they consider them differently. However, not all women universally experience biomedical technologies. We use the concept of technological salience to address how differences in subjective implications of a technology might explain differences in women’s attitudes toward biotechnology. In a sample of U.S. women from the National Survey of Fertility Barriers, we examine how (...) women with and without a biomedical barrier to fertility evaluate biotechnology for infertility, which, we argue, reflects differences in technological salience. For women with a biomedical barrier, various experiences, beliefs, and values impacted their attitudes; yet, most of these did not affect attitudes if women had not experienced a fertility barrier. Results suggest that technological salience contextualizes women’s attitudes toward these biotechnologies and may also have broader implications for other biotechnologies. (shrink)

While there is a steadily growing literature on epistemic injustice in healthcare, there are few discussions of the role that biomedical technologies play in harming patients in their capacity as knowers. Through an analysis of newborn and pediatric genetic and genomic sequencing technologies (GSTs), I argue that biomedical technologies can lead to epistemic injustice through two primary pathways: epistemic capture and value partitioning. I close by discussing the larger ethical and political context of critical analyses of GSTs and (...) their broader implications for just and equitable healthcare delivery. (shrink)

Global governance of emerging, disruptive biomedical technologies presents a multitude of ethical problems. The recent paper by Shoziet alraises some of these problems in the context of a discussion of what could be themostdisruptive (and most morally fraught) emerging biomedical technology—human germline genome editing. At the heart of their argument is the claim that, for something like gene editing, there is likely to be tension between the interests of specific states in crafting regulation for the technology, (...) and disagreement about what would be necessary to meet the requirements for responsible translation of gene editing into the clinic. This complicates hopes for a tidy, algorithmic process of crafting global governance via frameworks for regulation built around core ‘ethical values and principles’ (as they are called in the WHO Framework), and also forces us to confront deeper philosophical questions about biotechnology and global health. (shrink)

Although it is now generally acknowledged that new biomedical technologies often produce new definitions and sometimes even new concepts of disease, this observation is rarely used in research that anticipates potential ethical issues in emerging technologies. This article argues that it is useful to start with an analysis of implied concepts of disease when anticipating ethical issues of biomedical technologies. It shows, moreover, that it is possible to do so at an early stage, i.e. when a technology (...) is only just emerging. The specific case analysed here is that of ‘molecular medicine’. This group of emerging technologies combines a ‘cascade model’ of disease processes with a ‘personal pattern’ model of bodily functioning. Whereas the ethical implications of the first are partly familiar from earlier—albeit controversial—forms of preventive and predictive medicine, those of the second are quite novel and potentially far-reaching. (shrink)

The raison d'etre of this dissertation is the Muslim dilemma when confronted with some of the biotechnological innovations which relate to the precautionary measures to prevent the birth of children, technological manipulation in order to overcome infertility and the termination of fetal life. All of these issues are directly related to human life and thus pose serious problems. The Muslim is one whose life is regulated by the teachings of the Qur'an and Sunnah of the Prophet. Hence, his action is (...) considered proper or right if it conforms to their broad teachings and improper or wrong if it contra-dicts the very spirit of their teachings. This study is thus focused on the teachings of the Qur'an and the relevant ahadith pertaining to the beginning of human life, the sanctity of married life, and the sanctions for the termination of human life. The objective is to analyze the relevant injunctions and present them in a systematic way to prepare ground for the assessment of such biotechnological issues so as to ascertain their legality under the Shari'ah. ;In order to comprehend the ethical system envisaged by the Qur'an and Sunnah vis-a-vis the biomedical issues it is essential that we acquaint ourselves with the fundamental concepts pertain- ing to health care, medical treatment and medical ethics. Thereafter, a detailed discussion follows on reproductive control, biotechnical parenting and abortion. Each of these issues are elaborately analyzed in the light of the spirit and principles envisaged by the relevant injunctions. ;Proper grasp of the implications of these issues within the Islamic framework is expected to provide the perplexed Muslims with the necessary guidelines in the event that circumstances demand that they opt for either the contraceptive devices or the modern tech-niques to overcome infertility or abortion. (shrink)

Health technology assessment (HTA) was developed in the 1970s and 1980s to facilitate decision making on the desirability of new biomedical technologies. Since then, many of the standard tools and methods of HTA have been criticized for their implicit normativity. At the same time research into the character of technology in practice has motivated philosophers, sociologists and anthropologists to criticize the traditional view of technology as a neutral instrument designed to perform a specific function. Such research (...) suggests that the tools and methods of more traditional forms of HTA are often inspired by an ‘instrumentalist’ conception of technology that does not fit the way technology actually works. This paper explores this hypothesis for a specific case: the assessments and deliberations leading to the introduction of breast cancer screening in the Netherlands. After reconstructing this history of HTA ‘in the making’ the stepwise model of HTA that emerged during the process is discussed. This model was rooted indeed in an instrumentalist conception of technology. However, a more detailed reconstruction of several episodes from this history reveals how the actors already experienced the inadequacy of some of the instrumentalist presuppositions. The historical case thus shows how an instrumentalist conception of technology may result in implicit normative effects. The paper concludes that an instrumentalist view of technology is not a good starting point for HTA and briefly suggests how the fit between HTA methods and the actual character of technology in practice might be improved. (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)

HTA and TA institutions at national parliaments (PTA) both share the same origin and of course have objectives and some of their methods in common. Nevertheless both TA branches developed in some distance during the 1970s and 1980s. Drawing on the case of biomedicine this paper outlines the differences between HTA and PTA, highlighting the “clinical perspective” of HTA and the “societal perspective” of PTA. It is shown that biomedicine which has developed rapidly during the last decade has hardly been (...) dealt with by HTA, whereas it ranked quite prominent on the agendas of PTA institutions. Biomedical technologies became a subject of policy making beyond the boundaries of health care politics since biomedicine is perceived as an ethical challenge to society and not only as a medical innovation that has to be assessed by clinical experts. It is argued that there may however be good reasons to integrate the HTA and the PTA perspective in future TA on biomedical technologies. (shrink)

Graphical AbstractScience and technology consortia provide a viable solution for the recent unsustainable academic growth in biomedical research.

In this paper we examine the use of companion animals (pets) in studies of drugs and devices aimed at human and animal health and situate it within the context of philosophy of technology. We argue that companion animals serve a unique role in illuminating just what it means to use biological technologies and examine the implications for human-animal relationships. Though philosophers have often treated animals as technologies, we argue that the biomedical use of companion animals presents a new (...) configuration of ethical and technological concerns that deserves more attention. Though it seems that companion animals solve many of the ethical dilemmas caused by the use of laboratory animals, the use of companion animals presents its own set of ethical concerns. This paper contextualizes the use of companion animals in research. (shrink)

Heidegger’s thoughts on modern technology have received much attention in many disciplines and fields, but, with a few exceptions, the influence has been sparse in biomedical ethics. The reason for this might be that Heidegger’s position has been misinterpreted as being generally hostile towards modern science and technology, and the fact that Heidegger himself never subjected medical technologies to scrutiny but was concerned rather with industrial technology and information technology. In this paper, Heidegger’s philosophy of (...) modern technology is introduced and then brought to bear on medical technology. Its main relevance for biomedical ethics is found to be that the field needs to focus upon epistemological and ontological questions in the philosophy of medicine related to the structure and goal of medical practice. Heidegger’s philosophy can help us to see how the scientific attitude in medicine must always be balanced by and integrated into a phenomenological way of understanding the life-world concerns of patients. The difference between the scientific and the phenomenological method in medicine is articulated by Heidegger as two different ways of studying the human body: as biological organism and as lived body. Medicine needs to acknowledge the priority of the lived body in addressing health as a way of being-in-the-world and not as the absence of disease only. A critical development of Heidegger’s position can provide us with a criterion for distinguishing the uses of medical technologies that are compatible with such an endeavor from the technological projects that are not. (shrink)

Biomedical technologies can increasingly be used not only to combat disease, but also to augment the capacities or traits of normal, healthy people – a practice commonly referred to as biomedical enhancement. Perhaps the best‐established examples of biomedical enhancement are cosmetic surgery and doping in sports. But most recent scientific attention and ethical debate focuses on extending lifespan, lifting mood, and augmenting cognitive capacities.

This book systematically addresses the issue of assessing the normative nature of visions of emerging technologies in an epistemologically robust way. In the context of democratic governance of emerging technologies, not only it is important to reflect on technologies' moral significance, but also to address their emerging and future oriented character. The book proposes an original approach to deal with the issue of "plausible" ethical evaluation of new technologies. Taking its start from current debates about Technology Assessment, the proposed (...) solution emerges as a combination of theoretical and methodological insights from the fields of Philosophy of Technology, Science and Technology Studies and a normative justification based on pragmatist ethics. The book's main contribution is to engage a diverse and interdisciplinary audience (ethicists, philosophers, social scientists, technology assessment researchers and practitioners) in a reflection concerning the epistemological challenges that are associated to the endeavour of appraising the moral significance of emerging technologies in the attempt of democratically governing them. It brings together concepts and methodologies from different disciplines and shows their synergy in applying them to two specific case studies of emerging biomedical technologies. (shrink)

Biomedical enhancements, the applications of medical technology to make better those who are neither ill nor deficient, have made great strides in the past few decades. Using Amartya Sen's capability approach as my framework, I argue in this article that far from being simply permissible, we have a prima facie moral obligation to use these new developments for the end goal of promoting social justice. In terms of both range and magnitude, the use of biomedical enhancements will (...) mark a radical advance in how we compensate the most disadvantaged members of society. (shrink)

Due to the impact of biomedical technologies on human wellbeing, biomedical engineering presents discipline-specific ethical issues that can have global, economic, environmental, and societal consequences. Because ethics instruction is a component of accredited undergraduate engineering programs in the US, we developed an ethics assignment that provided biomedical engineering students with a framework for ethical decision-making and challenged them to critically reflect on ethical issues related to contemporary medical devices. Thematic analysis performed on student reflections (n = 73) (...) addressed two research questions: (i) what considerations do biomedical engineering undergraduates describe when asked to critically reflect on ethical issues related to contemporary medical devices; and (ii) how do students describe their participation in bioethical discussions? Students described design, economic factors, and empathy most frequently as considerations. Further, students reported confidence in their ability to engage in ethical discussion upon assignment completion. Overall, our analysis builds understanding of student attitudes and engagement to help inform future ethics curriculum development. (shrink)

Can genetic testing and manipulation be done ethically? -- Is the use of human embryos in stem cell research ethical? -- Chapter 3:is assisted reproductive technology ethical?

The relation between biomedical knowledge and clinicalknowledge is discussed by comparing their respectivestructures. The knowledge of a disease as a biologicalphenomenon is constructed by the interaction of factsand theories from the main biomedical disciplines:epidemiology, diagnostics, clinical trial, therapydevelopment and pathogenesis. Although these facts andtheories are based on probabilities andextrapolations, the interaction provides a reliableand coherent structure, comparable to a Kuhnianparadigma. In the structure of clinical knowledge,i.e. knowledge of the patient with the disease, notonly biomedical knowledge contributes to (...) the structurebut also economic and social relations, ethics andpersonal experience. However, the interaction betweeneach of the participating ``knowledges'' in clinicalknowledge is not based on mutual dependency andaccumulation of different arguments from each, as inbiomedical knowledge, but on competition and partialexclusion. Therefore, the structure of biomedicalknowledge is different from that of clinicalknowledge. This difference is used as the basis for adiscussion in which the place of technology,evidence-based medicine and the gap between scientificand clinical knowledge are evaluated. (shrink)

New technologies from artificial intelligence to drones, and biomedical enhancement make the future of the human family increasingly hard to predict and protect. This book explores how the philosophical tradition of virtue ethics can help us to cultivate the moral wisdom we need to live wisely and well with emerging technologies.

In this paper, I introduce a “promises and perils” framework for understanding the “soft” impacts of emerging technology, and argue for a eudaimonic conception of well-being. This eudaimonic conception of well-being, however, presupposes that we have something like stable character traits. I therefore defend this view from the “situationist challenge” and show that instead of viewing this challenge as a threat to well-being, we can incorporate it into how we think about living well with technology. Human beings are (...) susceptible to situational influences and are often unaware of the ways that their social and technological environment influence not only their ability to do well, but even their ability to know whether they are doing well. Any theory that attempts to describe what it means for us to be doing well, then, needs to take these contextual features into account and bake them into a theory of human flourishing. By paying careful attention to these contextual factors, we can design systems that promote human flourishing. (shrink)

In the past few years an increasing number of colleges and universities have added courses in biomedical ethics to their curricula. To some extent, these additions serve to satisfy student demands for "relevance. " But it is also true that such changes reflect a deepening desire on the part of the academic community to deal effectively with a host of problems which must be solved if we are to have a health-care delivery system which is efficient, humane, and just. (...) To a large degree, these problems are the unique result of both rapidly changing moral values and dramatic advances in biomedical technology. The past decade has witnessed sudden and conspicuous controversy over the morality and legality of new practices relating to abortion, therapy for the mentally ill, experimentation using human subjects, forms of genetic interven tion, suicide, and euthanasia. Malpractice suits abound and astronomical fees for malpractice insurance threaten the very possibility of medical and health-care practice. Without the backing of a clear moral consensus, the law is frequently forced into resolving these conflicts only to see the moral issues involved still hotly debated and the validity of existing law further questioned. In the case of abortion, for example, the laws have changed radically, and the widely pub licized recent conviction of Dr. Edelin in Boston has done little to foster a moral consensus or even render the exact status of the law beyond reasonable question. (shrink)

This chapter contains sections titled: General Ethical Issues Cellular, Genetic and Tissue Engineering Biomaterials, Prostheses and Implants Biomedical Imaging and Optics Neural Engineering References and Further Reading.

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)

This paper discusses the hazards of regulating controversial biomedical research in light of the emergence of powerful, multi-national biotechnology corporations. Prohibitions on the use of government funds can simply force controversial research into the private sphere, and unilateral or multilateral research bans can simply encourage multi-national companies to conduct research in countries that lack restrictive laws. Thus, a net effect of government regulation is that research migrates from the public to the private sphere. Because private research receives less oversight (...) and external scrutiny than public research, it can threaten the welfare and rights of human subjects, scientific progress and openness, and the quality of the approval process for new biomedical technologies. In order to avoid the harmful effects of government regulation of biotechnology, society should promote meaningful discussion and dialogue among scientists, industry leaders, and the public before resorting to regulatory solutions. Legislative or executive initiatives should be applied with great discretion and care, and should be crafted in such a way that they protect public health and safety, promote scientific progress, and avoid the hazards of privatized research and polarized debates. (shrink)

Biomedical Science Law & Practice is a practical strategic guide to the management of legal risks in biomedical science transactions, and commercialization of innovation and technology through strategic intellectual property licensing. This book provides a concise introduction to strategic legal risk management issues and strategic value creation in the entire biomedical science value chain, including legal liability issues from R&D, clinical trials, production of devices and market roll-out, protection of innovation through intellectual property (patents, copyrights, trade (...) marks and trade secrets); and commercialization of biomedical science innovation through strategic licensing and technology transfer, including unique licensing arrangements relating to genome. Checklists, sample agreements and biomedical patents and real life and hypothetical case studies used in the book facilitate learning at the operational or technical level of execution. (shrink)

Today, advances in medicine and biotechnology occur at a rapid pace and have a profound impact on our lives. Mechanical devices can sustain an injured person's life indefinitely. Computed tomography (CT) and magnetic resonance imaging (MRI) scans of the body and brain can reveal disorders before symptoms appear. Genetic testing of embryos can predict whether people will have diseases earlier or later in life. It may even become possible to clone human beings. These and other developments raise difficult ethical questions. (...) Biomedical Ethics is an engaging philosophical introduction to the most important ethical positions and arguments in six areas of biomedicine: the patient-doctor relationship, medical research on humans, reproductive rights and technologies, genetics, medical decisions at the end of life, and the allocation of scarce medical resources. Concisely capturing the historical, contemporary, and future-oriented aspects of the field, author Walter Glannon discusses both perennial issues in medicine, such as doctors' duties to patients, and recent and emerging issues in scientific innovation, including gene therapy and cloning. Ideal for undergraduate courses in contemporary moral problems, introduction to ethics, and introduction to bioethics, Biomedical Ethics is accessible to students who have little or no background in ethical theory, medicine, or biotechnology. (shrink)

This book shows the current state of research in the fields of health care and medicine, how the new technologies can be used for patient communication, health monitoring or for the treatment of patients.

The National Center for Biomedical Ontology is a consortium that comprises leading informaticians, biologists, clinicians, and ontologists, funded by the National Institutes of Health (NIH) Roadmap, to develop innovative technology and methods that allow scientists to record, manage, and disseminate biomedical information and knowledge in machine-processable form. The goals of the Center are (1) to help unify the divergent and isolated efforts in ontology development by promoting high quality open-source, standards-based tools to create, manage, and use ontologies, (...) (2) to create new software tools so that scientists can use ontologies to annotate and analyze biomedical data, (3) to provide a national resource for the ongoing evaluation, integration, and evolution of biomedical ontologies and associated tools and theories in the context of driving biomedical projects (DBPs), and (4) to disseminate the tools and resources of the Center and to identify, evaluate, and communicate best practices of ontology development to the biomedical community. Through the research activities within the Center, collaborations with the DBPs, and interactions with the biomedical community, our goal is to help scientists to work more effectively in the e-science paradigm, enhancing experiment design, experiment execution, data analysis, information synthesis, hypothesis generation and testing, and understand human disease. (shrink)

Allen Buchanan has argued for a linking of the ethics of human enhancement to the ethics of development more generally. The promise of the ‘enhancement enterprise' is that it may help develop society, just as other technological advances have in the past. He proposes a framework of intellectual property rights, government action to ensure the poor can access the enhancements, an international organization to administer the diffusion of new enhancement technologies from the West to poor countries, and the diffusion within (...) countries to the poorer populations. I take seriously his proposal of discussing biomedical enhancement in terms of the ethics of development. On these grounds of assessment, I argue that his proposal is politically conservative. To make the case, I distinguish conservatism in ethics from conservatism in politics; and I contextualize the proposal against the background of development economics and the neoliberal approach to development. (shrink)

The National Center for Biomedical Ontology is now in its seventh year. The goals of this National Center for Biomedical Computing are to: create and maintain a repository of biomedical ontologies and terminologies; build tools and web services to enable the use of ontologies and terminologies in clinical and translational research; educate their trainees and the scientific community broadly about biomedical ontology and ontology-based technology and best practices; and collaborate with a variety of groups who (...) develop and use ontologies and terminologies in biomedicine. The centerpiece of the National Center for Biomedical Ontology is a web-based resource known as BioPortal. BioPortal makes available for research in computationally useful forms more than 270 of the world's biomedical ontologies and terminologies, and supports a wide range of web services that enable investigators to use the ontologies to annotate and retrieve data, to generate value sets and special-purpose lexicons, and to perform advanced analytics on a wide range of biomedical data. (shrink)

How can we register the participation of a range of elements, extending beyond the human subject, in the production of HIV events? In the context of proposals around biomedical prevention, there is a growing awareness of the need to find ways of responding to complexity, as everywhere new combinations of treatment, behavior, drugs, norms, meanings and devices are coming into encounter with one another, or are set to come into encounter with one another, with a range of unpredictable effects. (...) In this paper I consider the operation of various framing devices that attribute responsibility and causation with regard to HIV events. I propose that we need to sharpen our analytic focus on what these devices do, their performativity—that is, their full range of worldly implications and effects. My primary examples are the criminal law and the randomized control trial. I argue that these institutions operate as framing devices: They attribute responsibility for HIV events and externalize other elements and effects in the process. Drawing on recent work in science and technology studies as well as queer theory, I set out an analytic frame that marks out a new role for HIV social research. Attentiveness to the performative effects of these devices is crucial, I suggest, if we want better to address the global HIV epidemic. (shrink)

Recent developments in biomedical research have the potential to radically transform modern medicine. The ethical dilemmas that these advances raise are discussed in the following chapters: Is Human Cloning Ethical? What Ethics Should Guide Organ Donations? Are Reproductive Technologies Ethical? What Ethics Should Guide Genetic Research?

Technology pertaining to genetically modified foods has created an abundance of food and various methods to protect new products and enhance productivity. However, many scientists, economists, and humanitarians have been critical of the application of these discoveries. They are apprehensive about a profit-driven mentality that, to them, seems to propel the innovators rather than a poverty-elimination mentality that should be behind such innovations. The objectives should be to afford the most benefit to those in need and to prevent hunger (...) around the world. Another major concern is the safety of genetically modified food. Muslims, as well as those in other religious communities, have been reactive rather than proactive. Muslims must connect scientific knowledge and ethical behavior based on faith. In Islam, there is no divide between the two. God has commanded us to seek knowledge and make discoveries to better our lives and our environment. We are trustees of this world and everything in it. The poor, the sick, and the wayfarers have a right to be fed and cared for. God reminds Muslims continuously that the earth and all the heavens belong to God; therefore, no one should feel hunger, no one should suffer or be prevented from sharing this bounty. (shrink)

Advances in technologies and biomedical informatics have expanded capacity to generate and share biomedical data. With a lens on genomic data, we present a typology characterizing the data-sharing landscape in biomedical research to advance understanding of the key stakeholders and existing data-sharing practices. The typology highlights the diversity of data-sharing efforts and facilitators and reveals how novel data-sharing efforts are challenging existing norms regarding the role of individuals whom the data describe.

It is widely accepted that translational research practitioners need to acquire special skills and knowledge that will enable them to anticipate, analyze, and manage a range of ethical issues. While there is a small but growing literature that addresses the ethics of translational research, there is a dearth of scholarship regarding how this might apply to engineers. In this paper we examine engineers as key translators and argue that they are well positioned to ask transformative ethical questions. Asking engineers to (...) both broaden and deepen their consideration of ethics in their work, however, requires a shift in the way ethics is often portrayed and perceived in science and engineering communities. Rather than interpreting ethics as a roadblock to the success of translational research, we suggest that engineers should be encouraged to ask questions about the socio-ethical dimensions of their work. This requires expanding the conceptual framework of engineering beyond its traditional focus on “how” and “what” questions to also include “why” and “who” questions to facilitate the gathering of normative, socially-situated information. Empowering engineers to ask “why” and “who” questions should spur the development of technologies and practices that contribute to improving health outcomes. (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)