Funding agencies in Canada are attempting to break down the organizational boundaries between disciplines to promote interdisciplinary research and foster the integration of the social sciences into the health research field. This paper explores the extent to which biomedical and clinician scientists’ perceptions of social science research operate as a cultural boundary to the inclusion of social scientists into this field. Results indicated that cultural boundaries may impede social scientists’ entry into the health research field (...) through three modalities: (1) biomedical and clinician scientists’ unfavourable and ambivalent posture towards social science research; (2) their opposition to a resource increase for the social sciences; and (3) clinician scientists procedural assessment criteria for social science. The paper also discusses the merits and limitations of Tom Gieryn’s concept of boundary-work for studying social dynamics within the field of science. (shrink)

ABSTRACT Ethical thinking about social science research is dominated by a biomedical model whose salient features are the assumption that only potential harms to subjects of research are relevant in the ethical evaluation of that research, and in the emphasis on securing informed consent in order to establish ethical probity. A number of counter‐examples are considered to the assumption, a number of defences against these counter‐examples are examined, and an alternative model is proposed for the ethical evaluation of (...) social science research: a model which can cope with the systemic harms which have been identified. This model is based on John Rawls's idea of original position reasoning and treats social science research as an institutional feature of the basic structure of society. (shrink)

Ethics review processes are frequently perceived as extending from codes and protocols rooted in biomedical disciplines. As a result, many researchers in the humanities and social sciences (HASS) find these processes to be misaligned, if not outrightly obstructive to their research. This leads some scholars to advocate against HASS participation in institutional review processes as they currently stand, or in their entirety. While ethics review processes can present a challenge to HASS researchers, these are not insurmountable and, in (...) fact, present opportunities for ethics review boards (ERBs) to mediate their practices to better attend to the concerns of the HASS disciplines. By highlighting the potential value of the ethics review process in recognising the nuances and specificity across different forms of research, this article explores the generative possibilities of greater collaboration between HASS researchers and ERBs. Remaining cognisant of the epistemic and methodological differences that mark different disciplinary formations in turn will benefit the ethical conduct of all researchers. (shrink)

Deception of subjects is used frequently in the social sciences. Examples are provided. The ethics of experimental deception are discussed, in particular various maneuvers to solve the problem. The results have implications for the use of deception in the biomedical sciences.

This collection focuses on virtue theory and the ethics of social science research. A moral philosophy that has been relatively neglected in the domain of research ethics, virtue ethics has much to offer those who wish to go beyond the difficulties generated by the biomedical model of research ethics and positively engage with the ethics of social scientific research. As the chapters contained in this volume show, the perspective provided by virtue ethics also exhibits a certain affinity (...) with the emerging discourse regarding research integrity. Contributors develop various facets of virtue ethics in order to illuminate a range of issues in the practice and governance of social science, including integrity, the ethics of ethical review, ethics education, and the notion of phrónēsis (wisdom). (shrink)

Pain research is still dominated by biomedical perspectives and the need to articulate pain in ways other than those offered by evidence based medical models is pressing. Examining closely subjective experiences of pain, this book explores the way in which pain is situated, communicated and formed in a larger cultural and social context. Dimensions of Pain explores the lived experience of pain, and questions of identity and pain, from a range of different disciplinary perspectives within the humanities and (...) social sciences. Discussing the acuity and temporality of pain, its isolating impact, the embodied expression of pain, pain and sexuality, gender and ethnicity, it also includes a cluster of three chapters discusses the phenomenon and experience of labour pains. This volume revitalizes the study of pain, offering productive ways of carefully thinking through its different aspects and exploring the positive and enriching side of world-forming pain as well as its limiting aspects. It will be of interest to academics and students interested in pain from a range of backgrounds, including philosophy, sociology, nursing, midwifery, medicine and gender studies. (shrink)

Ethical conduct is a maxim in scholarly research as well as scholarly endeavour generally. In the case of research involving humans, few if any question the necessity for ethics approval of procedures by ethics boards or committees. However, concerns have been raised about the appropriateness of ethics approval processes for social science research arguing that the orientation of ethics boards and committees to biomedical and experimental scientific research, institutional risk aversion, and other factors lead to over-protection of research (...) participants and overly restrictive processes that delay and sometimes prevent important social science research. This is particularly significant when social science research is required to respond to social, environmental, or health emergencies and in contract research projects for the reasons explained. This analysis of an ethics approval case study adds to increasing concerns that ethics approval processes can have perverse effects in the social sciences. While a single case study does not provide generalizable findings, in-depth analysis of a significant case can identify issues that need to be further explored. Recommendations offer pathways for facilitating social science research including in emergency situations in which timeliness is important and in collaborative approaches such as participatory action research, while maintaining high ethical standards. (shrink)

The experimental revolution in the social sciences is one of the most significant methodological shifts undergone by the field since the ‘quantitative revolution’ in the nineteenth century. One of the often valued features of social science experimentation is precisely the fact that there are clear methodological rules regarding hypothesis testing that come from the methods of the natural sciences and from the methodology of RCTs in the biomedical sciences, and that allow for the adjudication among contentious causal (...) claims. We examine critically this claim and argue that some current understandings of the practices that surround social science experimentation overestimate the degree to which experiments can actually fulfil this role as “objective” adjudicators, by neglecting the importance of shared background knowledge or assumptions and of consensus regarding the validity of the constructs involved in an experiment. We take issue with the way the distinction between internal and external validity is often used to comment on the inferential import of experiments, used both among practitioners and among philosophers of science. We describe the ways in which the more common use of the internal/external distinction differs from Cook and Campbell’s original methodological project, in which construct validity and the four-fold validity typology were all important in assessing the inferential import of experiments. We argue that the current uses of the labels internal and external, as applied to experimental validity, help to encroach a simplistic view on the inferential import of experiments that, in turn, misrepresents their capacity to provide objective knowledge about the causal relations between variables. (shrink)

In this paper, we use the case of the COVID-19 pandemic in Europe to address the question of what kind of knowledge we should incorporate into public health policy. We show that policy-making during the COVID-19 pandemic has been biomedicine-centric in that its evidential basis marginalised input from non-biomedical disciplines. We then argue that in particular the social sciences could contribute essential expertise and evidence to public health policy in times of biomedical emergencies and that we should (...) thus strive for a tighter integration of the social sciences in future evidence-based policy-making. This demand faces challenges on different levels, which we identify and discuss as potential inhibitors for a more pluralistic evidential basis. (shrink)

The Russo Williamson thesis (RWT) states that a causal claim can be established only if it can be established that there is a difference-making relationship between the cause and the effect, and that there is a mechanism linking the cause and the effect that is responsible for such a difference-making relationship (Russo & Williamson, 2007). The applicability of Russo and Williamson’s idea was hugely debated in relation to biomedical research, and recently it has been applied to the social (...) sciences (Shan & Williamson, 2021). While many philosophers and social scientists have advocated the use of different kinds of evidence for causal discoveries, others have criticised this approach. With this paper, I aim to defend RWT from criticisms and to show its importance in the social sciences. The paper is structured as follows. After a brief introduction, in Sect. 2, I will summarise RWT, and in Sect. 3 I will describe how this approach can be applied to the social sciences. In Sect. 4, I will reconstruct two main criticisms of this thesis proposed in the philosophy of the social sciences literature: namely (i) RWT is not used in the social sciences, (ii) RWT does not work. For each criticism I will provide a defence of RWT. My defence will be based on two general considerations: (i) RWT appears perfectly in line with the research methods used in the social sciences and (ii) RWT can be applied successfully to establish causal claims. In Sect. 5, moreover, I will examine the causal accounts that have motivated such criticisms and I will argue that they should be rejected to endorse RWT and a causal account able to accommodate the current use of mechanistic and difference-making evidence in the social sciences. Section 6 will conclude with a note on the relevance of RWT in both its descriptive and normative form. (shrink)

In Brazil, social science research ethics is a field still under construction and subject to intense dispute. The aim of this paper is to discuss how accepted principles of biomedical research ethics can be incorporated into the ethical review of social sciences, particularly open interviews, ethnographic research, and participant observation. The paper uses a case study—the ethnographic documentary "Severina's Story"—as the basis for analysis of the methodological and ethical issues raised in social science research. To promote (...) ethical social science research, based on principles such as human rights and the protection of vulnerable populations, institutional review boards must be sensitive to the epistemological and methodological particularities of all fields of human subjects research. (shrink)

El propósito fundamental del trabajo fue destacar la trascendencia social de las ciencias básicas biomédicas en la superación profesional de los tecnólogos en Laboratorio Clínico, egresados de la Facultad de Tecnología de la Salud de Camagüey. Se partió de las insuficiencias que influyen en el desempeño profesional de estos licenciados, y se justifica la importancia de las ciencias básicas biomédicas para el laboratorista clínico. Se concluyó que la ciencia y la tecnología son prácticas sociales que debe tener en cuenta (...) en su labor cotidiana el tecnólogo de la salud en Laboratorio Clínico y la necesidad de las ciencias básicas biomédicas en la superación profesional de estos tecnólogos ya que aportan los fundamentos científicos del proceder técnico en un laboratorio, lo cual permite capacitar un profesional no solo para llevar a cabo procederes, sino para comprender el porqué de los mismos. The main goal of this work was to highlight the social implications of the basic biomedical sciences in the professional training of the technologist in clinical laboratory graduated at the Health Technologic Faculty in Camaguey taking into account the insufficiencies in the professional performance of these specialists. It was evident that science and technology are social practices that the health technologist specialized in clinical laboratory has to take into account and the need of basic biomedical sciences in the professional development of these technologists because they offer the scientific basis of the technical procedure in a laboratory which allows the professional training not only to perform the procedures but also to understand the reason of them. (shrink)

Citizen science models of public participation in scientific research represent a growing area of opportunity for health and biomedical research, as well as new impetus for more collaborative forms of engagement in large-scale research. However, this also surfaces a variety of ethical issues that both fall outside of and build upon the standard human subjects concerns in bioethics. This article provides background on citizen science, examples of current projects in the field, and discussion of established and emerging ethical issues (...) for citizen science in health and biomedical research. (shrink)

The paper links Freud’s early work in the ‘Project for a scientific psychology’ with the psychoanalytic psychology of Kleinian object relations theory now current. Freud is often accused of introducing mechanism into his psychology and installing at its core an irreconcilable dichotomy of two disparate ways of explaining human behaviour. I suggest that Freud’s early mechanistic thinking is an attempt at what he only partly achieves, a functional account of the ‘mental apparatus’. I consider whether this way of conceptualising the (...) mind in functional terms is methodologically relevant to psychoanalytic investigation or whether it is at best heuristically useful. From a brief consideration of Kleinian object relations theory, illustrated by case material, I conclude that there are grounds for accepting the first of these alternatives. (shrink)

This article examines two theses formulated by Russo and Williamson in their study of causal inference in the health sciences. The two theses are assessed against evidence from a specific case in the social sciences, i.e., research on the institutional determinants of the aggregate unemployment rate. The first Russo–Williamson Thesis is that a causal claim can only be established when it is jointly supported by difference-making and mechanistic evidence. This thesis is shown not to hold. While researchers in my (...) case study draw extensively on both types of evidence, one causal claim out of the three analyzed is established even though it is exclusively supported by mechanistic evidence. The second Russo–Williamson Thesis is that standard accounts of causality fail to handle the dualist epistemology highlighted in the first Thesis. I argue that a counterfactual-manipulationist account of causality—which is endorsed by many philosophers as well as many social scientists—can perfectly make sense of the typical strategy in my case study to draw on both difference-making and mechanistic evidence; it is just an instance of the common strategy of increasing evidential variety. (shrink)

There is much discussion in the media and some of the scientific literature of how many of the conclusions from scientific research should be doubted. These critiques often focus on studies – typically in non‐experimental spheres of biomedical and social sciences – that search large datasets for novel correlations, with a risk that inappropriate statistical evaluations might yield dubious conclusions. By contrast, results from experimental biological research can often be interpreted largely without statistical analysis. Typically: novel observation(s) are (...) reported, and an explanatory hypothesis is offered; multiple labs undertake experiments to test the hypothesis; interpretation of the results may refute the hypothesis, support it or provoke its modification; the test/revise sequence is reiterated many times; and the field moves forward. I illustrate this experimental/non‐experimental dichotomy by examining the contrasting recent histories of: (a) our remarkable and growing understanding of how several inositol‐containing phospholipids contribute to the lives of eukaryote cells; and (b) the difficulty of achieving any agreed mechanistic understanding of why consuming dietary supplements of inositol is clinically beneficial in some metabolic diseases. (shrink)

Background: Research activities in sub-Saharan Africa may be limited to delegated tasks due to the strong control from Western collaborators, which could lead to scientific production of little value in terms of its impact on social and economic innovation in less developed areas. However, the current contexts of international biomedical research including the development of public-private partnerships and research institutions in Africa suggest that scientific activities are growing in sub-Saharan Africa. This study aims to describe the patterns of (...) clinical research activities at a sub-Saharan biomedical research center. Methods: In-depth interviews were conducted with a core group of researchers at the Medical Research Unit of the Albert Schweitzer Hospital from June 2009 to February 2010 in Lambarene, Gabon. Scientific activities running at the MRU as well as the implementation of ethical and regulatory standards were covered by the interview sessions. Results: The framework of clinical research includes transnational studies and research initiated locally. In transnational collaborations, a sub-Saharan research institution may be limited to producing confirmatory and late-stage data with little impact on economic and social innovation. However, ethical and regulatory guidelines are being implemented taking into consideration the local contexts. Similarly, the scientific content of studies designed by researchers at the MRU, if local needs are taken into account, may potentially contribute to a scientific production with long-term value on social and economic innovation in sub-Saharan Africa. Conclusion: Further research questions and methods in social sciences should comprehensively address the construction of scientific content with the social, economic and cultural contexts surrounding research activities. (shrink)

Engaging citizens in science projects has a number of epistemic benefits in terms of improving scientific out- comes and adjusting research to develop innovative solu- tions that are likelier to be used. Yet the emphasis on the epistemic benefits of citizen science projects and its risks, such as exploitation and a lack of benefit-sharing, a fail- ure to sufficiently inform participants of possible hazards and privacy issues, and unacknowledged authorship, which we can find in Wiggins and Wilbanks (2019), should not (...) shift to the background important justice- related interests regarding increasing participation, in particular as a prerequisite to providing the human right to participate in science (Timmermann 2014; Vayena and Tasioulas 2015). Beside the social interest in benefiting from scientific advancement—due to its major role in improving welfare—and keeping scientific practice within ethical boundaries, we need to acknowledge sci- entific participation to be very much in the interests of society. (shrink)

The repeal of the Eighth Amendment was a turning point in Irish social history, especially in relation to the Catholic Church. But abortion is not a settled matter and it will continue to generate controversy. Likewise, issues such as surrogacy and assisted dying will give rise to sharp differences of opinion. Legislation that seeks to address bioethical issues such as these will inevitably provoke demands for amendments or repeal. By examining developments in biomedical science, Irish law and some (...) central aspects of Catholic moral teaching, Don O'Leary builds a thorough analysis of the controversies relating to: contraception, abortion, IVF, surrogacy, human embryonic stem cell research, assisted suicide, church control of healthcare services. Biomedical Controversies in Catholic Ireland is essential reading for anyone who wishes to understand the historical background, ethical arguments and scientific advances that will inform debates about morality and social policy in the coming years. -- (from amazon.com). (shrink)

Scientists’ language use in communication to or with the public has often been criticised as merely strategic. This article explores three terms employed in stem cell and genomic research, to support the hypothesis that biomedical terminology is heavily influenced by different legal, cultural, and ethical backgrounds in different societies. The word ‘pre-embryo’ has never been part of any acceptable official rhetoric in Germany but was important in Britain. The ‘toti-’, ‘pluri-’, or ‘multipotency’ of specific stem cells became a topical (...) issue of scientific expertise in countries with strict regulations on embryo research. The distinction between ‘reproductive’ and ‘therapeutic’ cloning has become very common but problematic due to its obvious strategic purpose, and is intensely debated in the scientific community. The examination of these examples and the cultural framework in which they gain importance will demonstrate the mutual interconnectedness of biomedical science and social and cultural conditions. Separation of a purely descriptive terminology that belongs to science itself, adequately describing its discoveries, and a rhetoric that addresses external, non-scientific attitudes is impossible. Regulations, social discourses, and cultural traditions influence biomedical sciences, their scientific research projects and the terminology employed therein. Biomedical practices are considered ethically problematic not only by those external to the scientific realms, but also by some professionals participating in the research. Biomedical science is not a discrete field with clear boundaries and has to be re-conceptualized as an integral and important part of modern culture. (shrink)

The goal of this article is to explore how a social justice framework can help illuminate the role that consent should play in health and science policy. In the first section, we set the stage for our inquiry with the important case of Henrietta Lacks. Without her knowledge or consent, or that of her family, Mrs. Lacks’s cells gave rise to an enormous advance in biomedical science—the first immortal human cell line, or HeLa cells.

The modern biomedical research laboratory is increasingly defined by dynamic social material conditions requiring researchers to traverse multiple shifting cognitive ecologies within day-to-day practice. Although the complexity of biomedical research is well known, the mechanisms by which the social and material organisation of this space is negotiated has yet to be fully considered. Integrating insights from Material Engagement Theory and Enactive Cognition with observations undertaken within a biomedical research laboratory, this paper develops an understanding of (...) how actors are able to respond to the dynamically changing world that is enacted with and around them. (shrink)

Public attention on embryo research has never been greater. Modern reproductive medicine technology and the use of embryos to generate stem cells ensure that this will continue to be a topic of debate and research across many disciplines. This multidisciplinary book explores the concept of a 'healthy' embryo, its implications on the health of children and adults, and how perceptions of what constitutes child and adult health influence the concept of embryo 'health'. The concept of human embryo health is considered (...) from preconception to pre-implantation genetic diagnosis to recent foetal surgical approaches. Burgeoning capacities in both genetic and reproductive science and their clinical implications have catalysed the necessity to explore the concept of a 'healthy' embryo. The authors are from five countries and 13 disciplines in the social sciences, humanities, biological sciences and medicine, ensuring that the book has a broad coverage and approach. (shrink)

Ethics regulation for human-subject research has been established for about 20 years in Brazil. However, compliance with this regulation is controversial for non-biomedical sciences, particularly for human and social sciences, the source of a recent debate at the National Commission for Research Ethics. We hypothesized that for these fields, formal requirements for compliance with HSR regulation in graduate programs, responsible for the greatest share of Brazilian science, would be small in number. We analyzed institutional documents from 171 graduate (...) programs at six prestigious Brazilian universities in São Paulo and Rio de Janeiro, the states that fund most of the science conducted in Brazil. Among these programs, 149 were in HSS. The results suggest that non-compliance with standard regulation seems to be the rule in most of these programs. The data may reflect not only a resistance from scientists in these fields to comply with standard regulations for ethics in HSR but also a disciplinary tradition that seems prevalent when it comes to research ethics in HSR. However, recent encounters between Brazilian biomedical and non-biomedical scientists for debates over ethics in HSR point to a changing culture in the approach to research ethics in the country. (shrink)

The Term 'Practical Progress' in Biomedical Sciences. A Structuralistic Approach to the Reconstruction of Epistemological Terms in Medicine. An attempt is made to elucidate the structure of the term 'practical progress' and to reconstruct it logically. The importance of discovery and confirmation of new regularities as well as of practical rules arising from them depends on their contribution to the solution of practical problems. The application of this structuralistic definition of 'practical progress' is demonstrated with an example from cardiac (...) surgery concerning the solution of the practical medical problem of myocardial protection during open heart surgery. (shrink)

Biomedical deployments of data science capitalise on vast, heterogeneous data sources. This promotes a diversified understanding of what counts as evidence for health-related interventions, beyond the strictures associated with evidence-based medicine. Focusing on COVID-19 transmission and prevention research, I consider the epistemic implications of this diversification of evidence in relation to: (1) experimental design, especially the revival of natural experiments as sources of reliable epidemiological knowledge; and (2) modelling practices, particularly the recognition of transdisciplinary expertise as crucial to developing (...) and interpreting data models. Acknowledging such shifts in evidential, experimental and modelling practices helps avoid harmful applications of data-intensive methods. (shrink)

Since its first publication in 1818, Mary Shelley’s Frankenstein; or, The Modern Prometheus has transcended genres and cultures to become a foundational myth about science and technology across a multitude of media forms and adaptations. Following in the footsteps of the brilliant yet troubled Victor Frankenstein, professionals and practitioners have been debating the scientific ethics of creating life for decades, never before have powerful tools for doing so been so widely available. This paper investigates how engaging with the Frankenstein myth (...) may help scientists gain a more accurate understanding of their own beliefs and opinions about the social and ethical aspects of their profession and their work. The paper presents findings from phenomenological interviews with twelve scientists working on biotechnology, robotics, or artificial intelligence projects. The results suggest that the Frankenstein myth, and the figure of Victor Frankenstein in particular, establishes norms for scientists about what is considered unethical and dangerous in scientific work. The Frankenstein myth both serves as a social and ethical reference for scientists and a mediator between scientists and the society. Grappling with the cultural ubiquity of the Frankenstein myth prepares scientists to face their ethical dilemmas and create a more transparent research agenda. Meanwhile, by focusing on the differences between real scientists and the imaginary figure of Victor Frankenstein, scientists may avoid being labeled as dangerous individuals, and could better conceptualize the potential societal and ethical perceptions and implications of their research. (shrink)

Ethics regulation for human-subject research (HSR) has been established for about 20 years in Brazil. However, compliance with this regulation is controversial for non-biomedical sciences, particularly for human and social sciences (HSS), the source of a recent debate at the National Commission for Research Ethics. We hypothesized that for these fields, formal requirements for compliance with HSR regulation in graduate programs, responsible for the greatest share of Brazilian science, would be small in number. We analyzed institutional documents (collected (...) from June 2014 to May 2015) from 171 graduate programs at six prestigious Brazilian universities in São Paulo and Rio de Janeiro, the states that fund most of the science conducted in Brazil. Among these programs, 149 were in HSS. The results suggest that non-compliance with standard regulation seems to be the rule in most of these programs. The data may reflect not only a resistance from scientists in these fields to comply with standard regulations for ethics in HSR but also a disciplinary tradition that seems prevalent when it comes to research ethics in HSR. However, recent encounters between Brazilian biomedical and non-biomedical scientists for debates over ethics in HSR point to a changing culture in the approach to research ethics in the country. (shrink)

Authorship of a scientific paper is important in recognition of one’s work, and in the academic setting, helps in professional promotion. Conflicting views of authorship have led to disputes and debates in many scientific communities. Addressing ethical issues in medical research and publishing, and conforming to the requirements of international organizations and local research ethics boards, has become an essential part of the research endeavor. Ethical issues of biomedical authorship have been a matter of debate for years. Authorship problems (...) may involve problems with integrity, including ghost authorship and guest authorship. Some scientific disciplines, such as engineering or social sciences, may not have a firm guideline for authorship criteria; however this article reviews the criteria of authorship recommended by related international organizations of biomedical field and discusses common scenarios that may lead to authorship disputes and misconducts as well as issues related to authorship in multicenter studies. The paper also discusses possible scenarios that might be legitimate to make changes in authorship lists. (shrink)

The international symposium celebrated the bicentennial of the Dartmouth Medical School by generating 30 papers on general areas with specific orientations. For genetics the focus is the human genome, for neuroscience the origin and substrate of thinking, for health care asking for whom and by whom, for world population the crisis of human crowding, and for the future peering through the looking glass. Al Gore adds a special address on population growth and environmental impact. Drawings accompany profiles of the contributors. (...) There is no index. Annotation copyrighted by Book News, Inc., Portland, OR. (shrink)

Medicine has been a very fruitful source of significant issues for philosophy over the last 30 years. The vast majority of the issues discussed have been normative—they have been problems in morality and political philosophy that now make up the field called bioethics. However, biomedical science presents many other philosophical questions that have gotten relatively little attention, particularly topics in metaphysics, epistemology and philosophy of science. This volume focuses on problems in these areas as they surface in biomedical (...) science. Important changes in philosophy make biomedical science an especially interesting area of inquiry. Contemporary philosophy is largely naturalistic in approach—it takes philosophy to be constrained by the results of the natural sciences and able to contribute to the natural sciences as well. Exactly what those constraints and contributions should be is a matter of controversy. What is not controversial is that important questions in philosophy of science and metaphysics are raised by the practice of science. Physics, biology, and economics have all drawn extensive philosophical analysis, so much so that philosophical study of these areas have become specialized subdisciplines within philosophy of science. Philosophy of medicine approached from the perspective of philosophy of science—with important exceptions (Schaffner, 1993; Thagard, 2000)—has been relatively undeveloped. Nonetheless, medicine should have a central place in epistemological and metaphysical debates over science. It is unarguably the most practically important of the sciences. It also draws by the far the greatest resources and research efforts of any area in biology. Yet philosophy of biology has focused almost exclusively on evolutionary biology, leaving the vast enterprises of immunology, cancer biology, virology, clinical medicine, and so on unexplored. Naturalized philosophy has emphasized the important interplay of historical and sociological aspects of science with its philosophical interpretation. Biomedical science as a large scale social enterprise is a natural target for such approaches. Relatedly, within philosophy there has been a growing interest and appreciation for the connections between issues of value and issues of fact in science (Kincaid et al., 2007). Biomedical science is a paradigm instance where the two intersect. The upshot is that biomedical science is a potential rich area for philosophical investigation in areas outside biomedical ethics. This volume seeks to show that promise and to encourage its exploration. (shrink)

This paper addresses, and seeks to correct, some frequent misunderstandings concerning the claim that science is socially constructed. It describes several features of scientific inquiry that have been usefully illuminated by constructivist studies of science, including the mundane or tacit skills involved in research, the social relationships in scientific laboratories, the causes of scientific controversy, and the interconnection of science and culture. Social construction, the paper argues, should be seen not as an alternative to but an enhancement of (...) scientists’ own professional understanding of how science is done. The richer, more finely textured accounts of scientific practice that the constructivist approach provides are potentially of great relevance to public policy. (shrink)

BackgroundAdvances in biomedicine can substantially change human life. However, progress is not always followed by ethical reflection on its consequences or scientists’ responsibility for their creations. The humanities can help health sciences students learn to critically analyse these issues; in particular, literature can aid discussions about ethical principles in biomedical research. Mary Shelley’sFrankenstein; or, the modern Prometheus(1818) is an example of a classic novel presenting complex scenarios that could be used to stimulate discussion.Main textWithin the framework of the 200th (...) anniversary of the novel, we searched PubMed to identify works that explore and discuss its value in teaching health sciences. Our search yielded 56 articles, but only two of these reported empirical findings. Our analysis of these articles identified three main approaches to usingFrankensteinin teaching health sciences: discussing the relationship between literature and science, analysing ethical issues in biomedical research, and examining the importance of empathy and compassion in healthcare and research. After a critical discussion of the articles, we propose usingFrankensteinas a teaching tool to prompt students to critically analyse ethical aspects of scientific and technological progress, the need for compassion and empathy in medical research, and scientists’ responsibility for their discoveries.ConclusionFrankensteincan help students reflect on the personal and social limits of science, the connection between curiosity and scientific progress, and scientists’ responsibilities. Its potential usefulness in teaching derives from the interconnectedness of science, ethics, and compassion.Frankensteincan be a useful tool for analysing bioethical issues related to scientific and technological advances, such as artificial intelligence, genetic engineering, and cloning. Empirical studies measuring learning outcomes are necessary to confirm the usefulness of this approach. (shrink)

In the biomedical and behavioral sciences, it is widely recognized that researchers conducting studies involving human participants must respect the autonomy of research subjects. There is significant debate in the clinical research ethics and bioethics literatures about what it means for an individual to be autonomous. According to proponents of the Liberal Conception of Autonomy, an autonomous person is an agent who has interests and opinions and the capacity to deliberate about them. In contrast, proponents of the Relational Conception (...) of Autonomy argue that because humans are social creatures, autonomy is a relational concept and ought to be recognized as such by medical professionals. In this article, I argue that the LCA/RCA debate is flawed, and that the notion of freedom as non-domination, rather than autonomy, ought to be adopted for biomedical research ethics policies regarding informed consent and research agenda-setting. I then argue that this view of freedom should also be adopted... (shrink)

Since the early 1980s, private, for-profit corporations have become increasingly involved in all aspects of scientific research, especially of biomedical research. In this essay, I argue that there are dangerous epistemic consequences of this trend, which should be more thoroughly examined by social epistemologists. In support of this claim, I discuss a recent episode of pharmaceutical research involving the painkiller Vioxx. I argue that the research on Vioxx was epistemically problematic and that the primary cause of these inadequacies (...) was faulty institutional arrangements. More specifically, the research was organized in such a way as to allow short-term commercial interests to compromise epistemic integrity. Thus, the Vioxx case study, in conjunction with numerous case studies developed elsewhere, provides strong reasons for believing that the privatization of the biomedical sciences is epistemically worrisome, and it suggests that the primary response to this situation should be a social, or organizational, one. What kind of organizational response would be most beneficial? I briefly discuss two prominent social epistemological proposals for how scientific research should be organized - namely those of Philip Kitcher and Helen Longino - and I suggest that they are incapable of dealing with the phenomenon of privatization. I then draw upon the Vioxx episode in order to outline an alternative suggestion for reorganizing certain aspects of pharmaceutical research. (shrink)

With advances in medical science, the concept of agency has received increasing attention in biomedical ethics. However, most of the ethical discussion around definitions of agency has focused either on patients suffering from mental disorders or on patients receiving cutting-edge medical treatments in developed countries. Very little of the discussion around concepts of agency has focused on the situation of patients suffering from common diseases that affect populations worldwide. Therefore, the most widely-used definitions of agency may be not appropriate (...) to analyse common diseases among large populations. The branch of social sciences known as development studies draw on their own definitions of the term agency that may provide a more applicable and accurate way of referring to common and general cases than the definitions currently used in bioethics. Moreover, the psychological Self-Determination Theory may improve the usefulness of these definitions in common situations. This article explains the characteristics and the shortcomings of current bioethical definitions of agency when they are applied to common medical conditions worldwide. A new, value-based concept of agency, informed by development studies, is proposed as more accurate and useful for biomedical ethics. (shrink)

BackgroundOur human societies and certainly also (bio) medicine are more and more permeated with technology. There seems to be an increasing awareness among bioethicists that an effective and comprehensive approach to ethically guide these emerging biomedical innovations into society is needed. Such an approach has not been spelled out yet for bioethics, while there are frequent calls for ethical guidance of biomedical innovation, also by biomedical researchers themselves. New and emerging biotechnologies require anticipation of possible effects and (...) implications, meaning the scope is not evaluative after a technology has been fully developed or about hypothetical technologies, but real-time for a real biotechnology.Main textIn this paper we aim to substantiate and discuss six ingredients that we increasingly see adopted by ethicists and that together constitute “ethics parallel research”. This approach allows to fulfil two aims: guiding the development process of technologies in biomedicine and providing input for the normative evaluation of such technologies. The six ingredients of ethics parallel research are: (1) disentangling wicked problems, (2) upstream or midstream ethical analysis, (3) ethics from within, (4) inclusion of empirical research, (5) public participation and (6) mapping societal impacts, including hard and soft impacts. We will draw on gene editing, organoid technology and artificial intelligence as examples to illustrate these six ingredients.ConclusionEthics parallel research brings together these ingredients to ethically analyse and proactively or parallel guide technological development. It widens the roles and judgements from the ethicist to a more anticipatory and constructively guiding role. Ethics parallel research is characterised by a constructive, rather than a purely critical perspective, it focusses on developing best-practices rather than outlining worst practice, and draws on insights from social sciences and philosophy of technology. (shrink)

The concept of “ethical research” holds considerable sway over the ways in which contemporary biomedical, natural, and social science investigations are funded, regulated, and practiced within a variety of countries. Some commentators have viewed this “new” means of governance positively; others, however, have been resoundingly critical, regarding it as restrictive and ethics bodies and regulations unfit for the task they have been set. Regardless, it is clear that science today is an “ethical” business. The ways in which formal (...) and informal ethical discourses and practices—what might be called “regimes of normativity”—structure scientific work and the meanings it is ascribed with have, however, been underexplored. This article attends to how science and ethics articulate; how they are, in many ways, co-produced. Exploring these processes of co-production casts into sharp relief the essential emotionality of science; the relationships investigators have with their colleagues, work, and research participants pulse with emotion, potentially shaping in important ways the very kinds of knowledge that laboratories produce. (shrink)

This book is a contribution to the nascent discourse on global health and biomedical research ethics involving Muslim populations and Islamic contexts. It presents a rich sociological account about the ways in which debates and questions involving Islam within the biomedical research context are negotiated - a perspective which is currently lacking within the broader bioethics literature. The book tackles some key understudied areas including: role of faith in moral deliberations within biomedical research ethics, the moral anxiety (...) and frustration experienced by researchers when having to negotiate multiple moral sources and how the marginalisation of women, the prejudice and abuse faced by groups such as sex workers and those from the LGBT community are encountered and negotiated in such contexts. The volume provides a valuable resource for researchers and scholars in this area by providing a systematic review of ethical guidelines and a rich case-based account of the ethical issues emerging in biomedical research in contexts where Islam and the religious moral commitments of Muslims are pertinent. The book will be essential for those conducting research in low and middle income countries that have significant Muslim populations and for those in Muslim-minority settings. It will also appeal to researchers and scholars in religious studies, social sciences, philosophy, anthropology and theology, as well as the fields of biomedical ethics, Islamic ethics and global health.. (shrink)

Citizens today are increasingly expected to be knowledgeable about and prepared to engage with biomedical knowledge. In this article, I wish to reframe this ‘public understanding of science’ project, and place fresh emphasis on public understandings of research: an engagement with the everyday laboratory practices of biomedicine and its associated ethics, rather than with specific scientific facts. This is not based on an assumption that non-scientists are ‘ignorant’ and are thus unable to ‘appropriately’ use or debate science; rather, it (...) is underpinned by an empirically-grounded observation that some individuals may be unfamiliar with certain specificities of particular modes of research and ethical frameworks, and, as a consequence, have their autonomy compromised when invited to participate in biomedical investigations. Drawing on the perspectives of participants in my own sociological research on the social and ethical dimensions of neuroscience, I argue that public understanding of biomedical research and its ethics should be developed both at the community level and within the research moment itself in order to enhance autonomy and promote more socially robust science. Public bioethics will have to play a key role in such an endeavour, and indeed will contribute in important ways to the opening up of new spaces of symmetrical engagement between bioethicists, scientists and wider publics—and hence to the democratisation of the bioethical enterprise. (shrink)

Studies in the social and biomedical sciences of racial differences in socioeconomic status or health within a population view the race of members as fixed and look for a difference in the frequency of a trait like average income or disease risk between racial subgroups. But, as I explain in this paper, there are good reasons to allow the race of members to vary with the trait whose variation within the population is to be described or explained. According (...) to such a view of race, racial categories are more scientifically significant if membership in the categories is allowed to vary with differences in scientific interest rather than held constant across a variety of interests. (shrink)

University of North Carolina at Greensboro Most approaches to the philosophy of the natural and social sciences are basedon completed scientific investigations. However, there are many importantcases in science in which testing is incomplete. These cases are termed suspendedtrials and are particularly significant in biomedical and allied health fields. Initially,the authors' interest in suspended trials was piqued by a controversialmethod for assisting autistic children known as facilitated communication. Thisarticle examines facilitated communication and other examples of suspendedtrials from the (...) perspective of an economics of science and game theory. Themodel is consistent with recent evolutionary approaches to the philosophy ofthe natural and social sciences and with recent contributions to an economicunderstanding of science. Key Words: clinical trials • innovative therapies • economics of science • suspended trials • facilitated communication • economics of clinical research. (shrink)

The scientific validity of racial categories has been the subject of debate among population geneticists, evolutionary biologists, and physical anthropologists for several decades. After World War II, the rejection of eugenics, which had supported sterilization laws and other destructive programs in the United States, generated a compelling critique of the biological basis of race. The classification of human beings into distinct biological “races” is a relatively recent invention propped up by deeply flawed evidence and historically providing the foundation of racist (...) ideology and inequities of power. Social scientists’ conclusion that race is socially constructed was confirmed by genomic studies of human variation, including the Human Genome Project, showing high levels of genetic similarity within the human species. Some scholars came to believe that the science of human genetic diversity would replace race as the preeminent means of grouping people for scientific purposes. (shrink)

In revising the Federal Policy for the Protection of Human Subjects between 2009 and 2018, regulators devoted the vast bulk of their attention to debates over biomedical research. They lacked both expertise in and concern about the social sciences and humanities, yet they imposed their will on experts in those fields. The revision process was secretive, spasmodic, and unrepresentative, especially compared to rulemaking in Canada, where social scientists participate in the process, and revisions take place every few (...) years. The result was a final rule that offers some wins for social science and the humanities, but that fails to solve the problems identified by Ezekiel Emanuel and in the 2011 advance notice of proposed rulemaking. (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)