A "reading" of archival material on the Rani of Sirmur shows the soldiers and administrators of the East India Company constructing the object of representations that becomes the reality of India. The Rani emerges only when she is needed in the space of imperial production. Caught between the patriarchy of her husband, the Raja of Sirmur, and the imperialism of the British who deposed him, she is in an almost allegorical position. Both patriarchal subj ect- formation and imperialist object-constitution efface (...) the dubious place of the free will of the sexed subject as female. In the cracks between the production of the archives and indigenous patriarchy, today distanced by the waves of hegemonic "feminism," there is no "real Rani" to be found. (shrink)

Evolutionary theory is undergoing an intense period of discussion and reevaluation. This, contrary to the misleading claims of creationists and other pseudoscientists, is no harbinger of a crisis but rather the opposite: the field is expanding dramatically in terms of both empirical discoveries and new ideas. In this essay I briefly trace the conceptual history of evolutionary theory from Darwinism to neo-Darwinism, and from the Modern Synthesis to what I refer to as the Extended Synthesis, a more inclusive conceptual framework (...) containing among others evo–devo, an expanded theory of heredity, elements of complexity theory, ideas about evolvability, and a reevaluation of levels of selection. I argue that evolutionary biology has never seen a paradigm shift, in the philosophical sense of the term, except when it moved from natural theology to empirical science in the middle of the 19th century. The Extended Synthesis, accordingly, is an expansion of the Modern Synthesis of the 1930s and 1940s, and one that—like its predecessor—will probably take decades to complete. (shrink)

Some people contend that fetuses have moral status but less than that of paradigm persons. Many people hold views implying that sentient animals have moral status but less than that of persons. These positions suggest that moral status admits of degrees. Does it? To address this question, we must first clarify what it means to speak of degrees of moral status. The paper begins by clarifying the more basic concept of moral status and presenting two models of degrees of moral (...) status. It then sketches several significant considerations in favor of, and several against, the assertion of degrees of moral status. The paper concludes by drawing lessons from the discussion. (shrink)

This paper investigates what molecular biology has done for our understanding of the gene. I base a new account of the gene concept of classical genetics on the classical dogma that gene differences cause phenotypic differences. Although contemporary biologists often think of genes in terms of this concept, molecular biology provides a second way to understand genes. I clarify this second way by articulating a molecular gene concept. This concept unifies our understanding of the molecular basis of a wide variety (...) of phenomena, including the phenomena that classical genetics explains in terms of gene differences causing phenotypic differences. (shrink)

As I write this, in November 1971, people are dying in East Bengal from lack of food, shelter, and medical caxc. The suffering and death that are occurring there now axe not inevitable, 1101; unavoidable in any fatalistic sense of the term. Constant poverty, a cyclone, and a civil war have turned at least nine million people into destitute refugees; nevertheless, it is not beyond Lhe capacity of the richer nations to give enough assistance to reduce any further suffering to (...) very small proportions. The decisions arid actions of human beings can prevent this kind of suffering. Unfortunately, human beings have not made the necessary decisions. At the individual level, people have, with very few exceptions, not responded to the situation in any signihczmt way. Generally speaking, people have not given large sums to relief funds; they have not written t0 their parliamentaxy representatives demanding increased government assistance; they have not demonstrated in the streets, held symbolic fasts, or done anything else directed toward providing thc refugees with the means to satisfy their essential needs. At thc government level, no govcrmmcnt has given the sort of massive aid that would enable the refugees to survive fm: more than a few days. Britain, for instance, has given rather more than most countries. It has, to date, given £14,750,000. For comparative purposes, B1~itain’s share of thc nonreccverabla development costs of the Anglo-French Concorde project is already in excess of £275,000,000, and on present estimates will reach £440,000,¤00. The implication is that the British government values a supersonic transport more than thirty times as.. (shrink)

"Self-knowledge" is commonly used in philosophy to refer to knowledge of one's particular mental states, including one's beliefs, desires, and sensations. It is also sometimes used to refer to knowledge about a persisting self -- its ontological nature, identity conditions, or character traits. At least since Descartes, most philosophers have believed that self-knowledge is importantly different from knowledge of the world external to oneself, including others' thoughts. But there is little agreement about what precisely distinguishes self-knowledge from knowledge in other (...) realms. Partially because of this disagreement, philosophers have endorsed competing accounts of how we acquire self-knowledge. These accounts have important consequences for the scope of mental content, for mental ontology, and for personal identity. (shrink)

Rapid advances in genome editing and its potential application in medicine and enhancement have been hotly debated by scientists and ethicists. Although it has been proposed that germline gene editing be discouraged for the time being1, the use of gene editing in somatic human cells in the clinical context remains controversial, particularly for interventions aimed at enhancement2. In a report on human genome editing, the US National Academies of Sciences, Engineering, and Medicine (NAS; Washington, DC) notes that “important questions raised (...) with respect to genome editing include how to incorporate societal values into salient clinical and policy considerations”3. We report here our research that opens a window onto what the public thinks about these issues. (shrink)

Sperm, eggs and embryos are made up of more than genes, and there are indications that changes to non‐genetic structures in these elements of the germline can also be inherited. It is, therefore, a mistake to treat phrases like ‘germline inheritance’ and ‘genetic inheritance’ as simple synonyms, and bioethical discussion should expand its focus beyond alterations to the genome when considering the ethics of germline modification. Moreover, additional research on non‐genetic inheritance draws attention to a variety of means whereby differences (...) can be inherited in offspring generations that do not rely on differences in germline structures. Research on these diverse forms of inheritance challenges the notion that there is some special form of ethical concern that falls on germline interventions in general, and on interventions to the nuclear genome within the germline in particular. (shrink)

In this paper, I argue that the increasing data about non-genetic inheritance requires the construction of a new conceptual framework that should complement the inclusive approaches already discussed in the literature. More precisely, I hold that this framework should be epistemologically relevant for evolutionary biologists in capturing the limits of extended inheritance and in reassessing the boundaries of biological systems that transmit traits to their offspring. I outline the first elements of an organizational account of extended inheritance. In this account, (...) the category of inherited factors is neither restricted to genes nor extended to stable resources related to trans-generational similarities. Instead, it includes persisting constitutive elements appearing as difference makers for heterogeneous organizational constraints, namely for heterogeneous constitutive parts whose specific role is to harness flows of matter and energy across generations of clearly delimited extended organized systems. This both inclusive and restrictive framework opens an additional way to apprehend how extended inheritance may affect evolutionary trajectories. (shrink)

What’s the basis for considering an egg donor a genetic parent but not a mitochondrial donor? I will argue that a closer look at the biological facts will not give us an answer to this question because the process by which one becomes a genetic parent, i.e., the process of reproduction, is not a concept that can be settled by looking. It is, rather, a concept in need of philosophical attention. The details of my argument will rest on recent developments (...) in biological technology, but the persuasiveness of my argument will turn on the history of another biological concept, death. Given some important similarities between the two concepts, the way in which ‘death’ evolved in the recent past can provide guidance on how we should think about ‘reproduction.’. (shrink)

It seems obvious that phenomenally conscious experience is something of great value, and that this value maps onto a range of important ethical issues. For example, claims about the value of life for those in a permanent vegetative state, debates about treatment and study of disorders of consciousness, controversies about end-of-life care for those with advanced dementia, and arguments about the moral status of embryos, fetuses, and non-human animals arguably turn on the moral significance of various facts about consciousness. However, (...) though work has been done on the moral significance of elements of consciousness, such as pain and pleasure, little explicit attention has been devoted to the ethical significance of consciousness. In this book Joshua Shepherd presents a systematic account of the value present within conscious experience. This account emphasizes not only the nature of consciousness, but the importance of items within experience such as affect, valence, and the complex overall shape of particular valuable experiences. Shepherd also relates this account to difficult cases involving non-humans and those with disorders of consciousness, arguing that the value of consciousness influences and partially explains the degree of moral status a being possesses, without fully determining it. The upshot is a deeper understanding of both the moral importance of phenomenal consciousness and its relations to moral status. This book will be of great interest to philosophers and students of ethics, bioethics, philosophy of psychology, philosophy of mind and cognitive science. (shrink)

The renowned philosopher John Searle reveals the fundamental nature of social reality. What kinds of things are money, property, governments, nations, marriages, cocktail parties, and football games? Searle explains the key role played by language in the creation, constitution, and maintenance of social reality. We make statements about social facts that are completely objective, for example: Barack Obama is President of the United States, the piece of paper in my hand is a twenty-dollar bill, I got married in London, etc. (...) And yet these facts only exist because we think they exist. How is it possible that we can have factual objective knowledge of a reality that is created by subjective opinions? This is part of a much larger question: How can we give an account of ourselves, with our peculiar human traits DS mind, reason, freedom, society - in a world that we know independently consists of mindless, meaningless particles? How can we account for our social and mental existence in a realm of brute physical facts? In answering this question, Searle avoids postulating different realms of being, a mental and a physical, or worse yet, a mental, a physical, and a social. There is just one reality: Searle shows how the human reality fits into that one reality. Mind, language, and civilization are natural products of the basic facts of the physical world described by physics, chemistry and biology. Searle explains how language creates and maintains the elaborate structures of human social institutions. These institutions serve to create and distribute power relations that are pervasive and often invisible. These power relations motivate human actions in a way that provides the glue that holds human civilization together. Searle shows how this account illuminates human rationality, free will, political power, and human rights. Our social world is a world created and maintained by language. (shrink)

In der 1785 veröffentlichten Grundlegung zur Metaphysik der Sitten formuliert Kant erstmals die Prinzipien einer universalistischen Ethik der Autonomie, deren Einfluß bis heute ungebrochen ist. Schon beim Übergang von der gemeinen zur philosophischen Vernunfterkenntnis findet man die Hauptgedanken: In der Ethik geht es nicht primär um das gute Leben und das Glück, und es geht auch zunächst nicht darum, welche Handlungserfolge erzielt werden; Gegenstand moralischer Hochschätzung sind vielmehr Intentionen und Maximen. Gut ist, was für alle vernünftigen Wesen gilt, weil es (...) von ihnen als autonomen und vernünftigen Wesen gewollt wird. Die Schrift ist kurz, einfach gegliedert und verständlich geschrieben. Sie eignet sich daher als Einführung in Kants Ethik, enthält aber zugleich als Grundlegung alle wesentlichen Gedanken seiner praktischen Philosophie. Auf der Grundlage der Originalausgabe von 1785/86 wurde der Text völlig neu erstellt. Eines der wichtigsten Bücher der Philosophiegeschichte liegt damit in einer zuverlässigen und preisgünstigen Neuausgabe vor. (shrink)

Compares classic and contemporary theories of genetics and evolution and explores the role of teleological thought in biology.

Kenneth F. Schaffner compares the practice of biological and medical research and shows how traditional topics in philosophy of science—such as the nature of theories and of explanation—can illuminate the life sciences. While Schaffner pays some attention to the conceptual questions of evolutionary biology, his chief focus is on the examples that immunology, human genetics, neuroscience, and internal medicine provide for examinations of the way scientists develop, examine, test, and apply theories. Although traditional philosophy of science has regarded scientific discovery—the (...) questions of creativity in science—as a subject for psychological rather than philosophical study, Schaffner argues that recent work in cognitive science and artificial intelligence enables researchers to rationally analyze the nature of discovery. As a philosopher of science who holds an M.D., he has examined biomedical work from the inside and uses detailed examples from the entire range of the life sciences to support the semantic approach to scientific theories, addressing whether there are "laws" in the life sciences as there are in the physical sciences. Schaffner's novel use of philosophical tools to deal with scientific research in all of its complexity provides a distinctive angle on basic questions of scientific evaluation and explanation. (shrink)

Human cerebral organoids (HCOs) are three-dimensional in vitro cell cultures that mimic the developmental process and organization of the developing human brain. In just a few years this technique has produced brain models that are already being used to study diseases of the nervous system and to test treatments and drugs. Currently, HCOs consist of tens of millions of cells and have a size of a few millimeters. The greatest limitation to further development is due to their lack of vascularization. (...) However, recent research has shown that human cerebral organoids can manifest the same electrical activity and connections between brain neurons and EEG patterns as those recorded in preterm babies. All this suggests that, in the future, HCOs may manifest an ability to experience basic sensations such as pain, therefore manifesting sentience, or even rudimentary forms of consciousness. This calls for consideration of whether cerebral organoids should be given a moral status and what limitations should be introduced to regulate research. In this article I focus particularly on the study of the emergence and mechanisms of human consciousness, i.e. one of the most complex scientific problems there are, by means of experiments on HCOs. This type of experiment raises relevant ethical issues and, as I will argue, should probably not be considered morally acceptable. (shrink)

Because the term ‘epigenetics’ has been used in a wide array of inquires within the life-sciences, it has come to bear a significant number of meanings. And just as biologists cannot come to an univocal understanding on what epigenetics connotes, the effect that its study has had in challenging contemporary neo-Darwinian, genecentred paradigms is also unclear. Some scientists and philosophers go as far as to say epigenetics has eroded dichotomies central to modern western thought, such as nature and nurture, or (...) genotype and phenotype – but the matter ignites a great deal of controversy. What seems unquestionable, however, is that the notion that genetic material is a ‘programme’ that simply manifests itself in an external correlative, thus accounting for the development of a living organism, seems to have – at the very least – shifted. Rather than attempting to pinpoint the implications of epigenetics in contemporary biology, this article focuses on the ‘literary’ dimension of scientific debate: instability of meaning, metaphorical shifts, a redrawing of margins and limits. Furthermore, it will be argued that metaphor does not merely have a pedagogical value in the field but rather works proactively throughout the genesis, development and morphology of science and theory. By outlining a ‘literary’ dimension in discussions around genetics one can identify what Squier refers to as ‘the epistemological value of the imprecise’, which in the case of epigenetics seems to have jeopardized not only the boundaries between genes and their external correlatives, but even challenged the frontiers of traditional disciplinary discourse. (shrink)

Philosophers and historians of biology have argued that genes are conceptualized differently in different fields of biology and that these differences influence both the conduct of research and the interpretation of research by audiences outside the field in which the research was conducted. In this paper we report the results of a questionnaire study of how genes are conceptualized by biological scientists at the University of Sydney, Australia. The results provide tentative support for some hypotheses about conceptual differences between different (...) fields of biological research. (shrink)

A rich literature in public health has demonstrated that health is strongly influenced by a host of environmental factors that can vary according to social, economic, geographic, cultural or physical contexts. Bioethicists should, we argue, recognize this and – where appropriate – work to integrate environmental concerns into their field of study and their ethical deliberations. In this article, we present an argument grounded in scientific research at the molecular level that will be familiar to – and so hopefully more (...) persuasive for – the biomedically-inclined in the bioethics community. Specifically, we argue that the relatively new field of molecular epigenetics provides novel information that should serve as additional justification for expanding the scope of bioethics to include environmental and public health concerns. We begin by presenting two distinct visions of bioethics: the individualistic and rights-oriented and the communitarian and responsibility-oriented. We follow with a description of biochemical characteristics distinguishing epigenetics from genetics, in order to emphasize the very close relationship that exists between the environment and gene expression. This then leads to a discussion of the importance of the environment in determining individual and population health, which, we argue, should shift bioethics towards a Potterian view that promotes a communitarian-based sense of responsibility for the environment, in order to fully account for justice considerations and improve public health. (shrink)

This paper will begin with some very broad and general considerations about the kind of biological entities we are. This exercise is motivated by the belief that the view of what we—multicellular eukaryotic organisms—are that is widely assumed by biologists, medical scientists and the general public, is an extremely limited one. It cannot be assumed a priori that a more sophisticated view will make a major difference to the science or practice of medicine, and there are areas of medicine to (...) which it is probably largely irrelevant. However, in this case there are important implications for medicine, or so I shall argue. In particular, it enables us to appreciate fully the potential medical significance of some of the most exciting contemporary advances in general biology, in such fields as epigenetics, metagenomics, and systems biology; and part of this significance is that these advances have raised serious doubts about how we should understand the biological individuals that medicine is generally assumed to aim to treat. (shrink)

New data-driven technologies yield benefits and potentials, but also confront different agents and stakeholders with challenges in retaining control over their data. Our goal in this study is to arrive at a clear picture of what is meant by data sovereignty in such problem settings. To this end, we review 341 publications and analyze the frequency of different notions such as data sovereignty, digital sovereignty, and cyber sovereignty. We go on to map agents they concern, in which context they appear, (...) and which values they allude to. While our sample reveals a considerable degree of divergence and an occasional lack of clarity about intended meanings of data sovereignty, we propose a conceptual grid to systematize different dimensions and connotations. Each of them relates in some way to meaningful control, ownership, and other claims to data articulated by a variety of agents ranging from individuals to countries. Data sovereignty alludes to a nuanced mixture of normative concepts such as inclusive deliberation and recognition of the fundamental rights of data subjects. (shrink)

The publication of the first study to use gene editing techniques in human embryos (Liang et al., 2015) has drawn outrage from many in the scientific community. The prestigious scientific journals Nature and Science have published commentaries which call for this research to be strongly discouraged or halted all together (Lanphier et al., 2015; Baltimore et al., 2015). We believe this should be questioned. There is a moral imperative to continue this research.

Several authors have argued that causes differ in the degree to which they are ‘specific’ to their effects. Woodward has used this idea to enrich his influential interventionist theory of causal explanation. Here we propose a way to measure causal specificity using tools from information theory. We show that the specificity of a causal variable is not well-defined without a probability distribution over the states of that variable. We demonstrate the tractability and interest of our proposed measure by measuring the (...) specificity of coding DNA and other factors in a simple model of the production of mRNA. (shrink)

Recent molecular biology has seen the development of genomics as a successor to traditional genetics. This paper offers an overview of the structure, epistemology, and history of contemporary genomics. A particular focus is on the question to what extent the genome contains, or is composed of, anything that corresponds to traditional conceptions of genes. It is concluded that the only interpretation of genes that has much contemporary scientific relevance is what is described as the "developmental defect" gene concept. However, developmental (...) defect genes typically only correspond to general areas of the genome and not to precise chemical structures . The parts of the genome to be identified for an account of the processes of normal development are highly diverse, little correlated with traditional genes, and act in ways that are highly dependent on the cellular and higher level environment. Despite its historical development out of genetics, genomics represents a radically different kind of scientific project. (shrink)

According to the received view of evolution, only genes are inherited. From this view it follows that only genetically-caused phenotypic variation is selectable and, thereby, that all selection is at bottom genetic selection. This paper argues that the received view is wrong. In many species, there are intergenerationally-stable phenotypic differences due to environmental differences. Natural selection can act on these nongenetically-caused phenotypic differences in the same way it acts on genetically-caused phenotypic differences. Some selection is at bottom nongenetic selection. The (...) argument against the received view involves a reformulation of the concepts of inheritance and heritability. Inherited factors are all those developmental factors responsible for parent–offspring similarity; some inherited factors are genetic and some are not. Heritable variation is intergenerationally-stable phenotypic variation; some such variation is genetically-caused and some is not. The received view and its critics The possibility of nongenetic selection (the lucky butterfly) The reality of nongenetic selection 3.1 Imprinting mechanisms 3.2 Other learning mechanisms 3.3 Other nongenetic mechanisms Genetic and nongenetic inheritance mechanisms Genetic and nongenetic inherited factors Genetic and nongenetic heritability Conclusions + Current address: Dr Matteo Mameli, Research Fellow, King's College, Cambridge, CB2 1ST, United Kingdom, matteo.mameli{at}kings.cam.ac.uk' + u + '@' + d + ''//-->. (shrink)

It now seems technically feasible to culture human embryos beyond the “fourteen‐day limit,” which has the potential to increase scientific understanding of human development and perhaps improve infertility treatments. The fourteen‐day limit was adopted as a compromise but subsequently has been considered an ethical line. Does it remain relevant in light of technological advances permitting embryo maturation beyond it? Should it be changed and, if so, how and why? What justifications would be necessary to expand the limit, particularly given that (...) doing so would violate some people's moral commitments regarding human embryos? Robust stakeholder engagement preceded adoption of the fourteen‐day limit and should arguably be part of efforts to reassess it. Such engagement could also consider the need for enhanced oversight of human embryo research. In the meantime, developing and implementing reliable oversight systems should help foster high‐quality research and public confidence in it. (shrink)

Bioethical work on solidarity has yielded an array of divergent conceptions. But what do these accounts add to normative bioethics? What is solidarity’s distinctive social normative role? Prainsack and Buyx suggest that solidarity be understood as the ‘putty’ of justice. I argue here that the putty metaphor is deeply insightful and—when spelled out in detail—successfully explicates solidarity’s social normative function. Unfortunately, Prainsack and Buyx’s own account cannot play this role. I propose instead that the putty metaphor supports a conception of (...) solidarity as equity. This proposal enables us to answer whether and when we should act in solidarity, and with whom, while also capturing the putty metaphor and hence answering a basic question: what is solidarity for? (shrink)

The bioethical principle of autonomy is problematic regarding the future of the embryo who lacks the ability to self-advocate but will develop this defining human capacity in time. Recent experiments explore the use of clustered regularly interspaced short palindromic repeats /Cas9 for germline engineering in the embryo, which alters future generations. The embryo’s inability to express an autonomous decision is an obvious bioethical challenge of germline engineering. The philosopher Joel Feinberg acknowledged that autonomy is developing in children. He advocated that (...) to reserve this future autonomy, parents should be guided to make ethical decisions that provide children with open futures. Here, Feinberg’s 1980 open future theory is extended to the human embryo in the context of CRISPR germline engineering. Although the embryo does not possess the autonomous decision-making capacity at the time of germline engineering, the parental decision to permanently change the unique genetic fabric of the embryo and subsequent generations disregards future autonomy. Therefore, germline engineering in many instances is objectionable considering Feinberg’s open future theory. (shrink)

In clinical research – whether pharmaceutical, genetic or biomarker research – it is important to protect research participants’ autonomy and to ensure or strengthen their control over health-related decisions. Empirical–ethical studies have argued that both the ethical concept and the current legalistic practice of informed consent should be adapted to the complexity of the clinical environment. For this, a better understanding of recruitment, for which also the physician–patient relationship plays an important role, is needed.Our aim is to ethically reflect communication (...) processes by identifying patterns used by physicians to motivate patients’ participation in clinical research and to assess whether patients also use these patterns in formulating their own research motivation. We conducted a secondary analysis with empirical data from a research project involving physicians and patients in a clinical research setting of a biomarker study for rectal cancer treatment. Our empirical data included observations of physician–patient consultations ( n = 54) and semi-structured interviews with patients ( n = 40). Overall, we collected 93 interviews.We found two dominant communication patterns, which physicians applied for motivating patients to take part in this research study. Some forms of these patterns tend to mislead patients’ understanding, while others could justifiably be applied in this consultation setting without undermining patients’ autonomy. This insight that the physician–patient communication has a strong influence on patients increases the importance to strengthen physicians’ ethically acceptable communication patterns regarding research participation.We further suggest that there is a need for a critical reflection of the ethics committee’s requirements for information regarding research participation. (shrink)

Reproduction is central to biology and evolution. Standard concepts of reproduction are drawn from animals. Nonstandard examples of reproduction can be found in unicellular eukaryotes that distribute their reproductive strategies across multiple generations, and in mutualistic systems that combine different modes of reproduction across multiple lineages. Examining multigenerational and multilineal reproducers and how they align fitness has implications for conceptualizing units of evolution.

BackgroundThis article explores the reasons in favour of revising and extending the current 14-day statutory limit to maintaining human embryos in culture. This limit is enshrined in law in over a dozen countries, including the United Kingdom. In two recently published studies, scientists have shown that embryos can be sustained in vitro for about 13 days after fertilisation. Positive reactions to these results have gone hand in hand with calls for revising the 14-day rule, which only allows embryo research until (...) the 14th day after fertilisation.Main textThe article explores the most prominent arguments in favour of and against the extension of the 14-day limit for conducting research on human embryos. It situates these arguments within the history of the 14-day limit. I start by discussing the history of the 14-day limit in the United Kingdom and the reasons behind the decision to opt for a compromise between competing moral views. I then analyse the arguments that those who are generally in favour of embryo research put forward in support of extending the 14-day rule, namely the argument of the beneficence of research and the argument of technical feasibility. I then show how these two arguments played a role in the recent approval of two novel techniques for the replacement of faulty mitochondrial DNA in the United Kingdom. Despite the popularity and widespread use of these arguments, I argue that they are ultimately problematic and should not be straightforwardly accepted. I end by making a case for respecting value pluralism in the context of embryo research, and I present two reasons in favour of respecting value pluralism: the argument of public trust and the argument of democracy.ConclusionI argue that 14-day limit for embryo research is not a valuable tool despite being a solution of compromise, but rather because of it. The importance of respecting value pluralism needs to be considered in any evaluation concerning a potential change to the 14-day rule. (shrink)

BackgroundInnovations in technology have contributed to rapid changes in the way that modern biomedical research is carried out. Researchers are increasingly required to endorse adaptive and flexible approaches to accommodate these innovations and comply with ethical, legal and regulatory requirements. This paper explores how Dynamic Consent may provide solutions to address challenges encountered when researchers invite individuals to participate in research and follow them up over time in a continuously changing environment.MethodsAn interdisciplinary workshop jointly organised by the University of Oxford (...) and the COST Action CHIP ME gathered clinicians, researchers, ethicists, lawyers, research participants and patient representatives to discuss experiences of using Dynamic Consent, and how such use may facilitate the conduct of specific research tasks. The data collected during the workshop were analysed using a content analysis approach.ResultsDynamic Consent can provide practical, sustainable and future-proof solutions to challenges related to participant recruitment, the attainment of informed consent, participant retention and consent management, and may bring economic efficiencies.ConclusionsDynamic Consent offers opportunities for ongoing communication between researchers and research participants that can positively impact research. Dynamic Consent supports inter-sector, cross-border approaches and large scale data-sharing. Whilst it is relatively easy to set up and maintain, its implementation will require that researchers re-consider their relationship with research participants and adopt new procedures. (shrink)

The emerging concept of systems medicine (or ‘P4 medicine’—predictive, preventive, personalized and participatory) is at the vanguard of the post-genomic movement towards ‘precision medicine’. It is the medical application of systems biology, the biological study of wholes. Of particular interest, P4 systems medicine is currently promised as a revolutionary new biomedical approach that is holistic rather than reductionist. This article analyzes its concept of holism, both with regard to methods and conceptualization of health and disease. Rather than representing a medical (...) holism associated with basic humanistic ideas, we find a technoscientific holism resulting from altered technological and theoretical circumstances in biology. We argue that this holism, which is aimed at disease prevention and health optimization, points towards an expanded form of medicalization, which we call ‘holistic medicalization’: Each person’s whole life process is defined in biomedical, technoscientific terms as quantifiable and controllable and underlain a regime of medical control that is holistic in that it is all-encompassing. It is directed at all levels of functioning, from the molecular to the social, continual throughout life and aimed at managing the whole continuum from cure of disease to optimization of health. We argue that this medicalization is a very concrete materialization of a broader trend in medicine and society, which we call ‘the medicalization of health and life itself’. We explicate this holistic medicalization, discuss potential harms and conclude by calling for preventive measures aimed at avoiding eventual harmful effects of overmedicalization in systems medicine (quaternary prevention). (shrink)

Biologists studying complex causal systems typically identify some factors as causes and treat other factors as background conditions. For example, when geneticists explain biological phenomena, they often foreground genes and relegate the cellular milieu to the background. But factors in the milieu are as causally necessary as genes for the production of phenotypic traits, even traits at the molecular level such as amino acid sequences. Gene-centered biology has been criticized on the grounds that because there is parity among causes, the (...) “privileging” of genes reflects a reductionist bias, not an ontological difference. The idea that there is an ontological parity among causes is related to a philosophical puzzle identified by John Stuart Mill: what, other than our interests or biases, could possibly justify identifying some causes as the actual or operative ones, and other causes as mere background? The aim of this paper is to solve this conceptual puzzle and to explain why there is not an ontological parity among genes and the other factors. It turns out that solving this puzzle helps answer a seemingly unrelated philosophical question: what kind of causal generality matters in biology? (shrink)

A historical and critical analysis of the concept of the gene that attempts to provide new perspectives and metaphors for the transformation of biology and its philosophy.

The problem of self-knowledge is one of the most fascinating in all of philosophy and has crucial significance for the philosophy of mind and epistemology. Gertler assesses the leading theoretical approaches to self-knowledge, explaining the work of many of the key figures in the field: from Descartes and Kant, through to Bertrand Russell and Gareth Evans, as well as recent work by Tyler Burge, David Chalmers, William Lycan and Sydney Shoemaker. -/- Beginning with an outline of the distinction between self-knowledge (...) and self-awareness and providing essential historical background to the problem, Gertler addresses specific theories of self-knowledge such as the acquaintance theory, the inner sense theory, and the rationalist theory, as well as leading accounts of self-awareness. The book concludes with a critical explication of the dispute between empiricist and rationalist approaches. (shrink)

No consensus yet exists on how to handle incidental fnd-ings in human subjects research. Yet empirical studies document IFs in a wide range of research studies, where IFs are fndings beyond the aims of the study that are of potential health or reproductive importance to the individual research participant. This paper reports recommendations of a two-year project group funded by NIH to study how to manage IFs in genetic and genomic research, as well as imaging research. We conclude that researchers (...) have an obligation to address the possibility of discovering IFs in their protocol and communications with the IRB, and in their consent forms and communications with research participants. Researchers should establish a pathway for handling IFs and communicate that to the IRB and research participants. We recommend a pathway and categorize IFs into those that must be disclosed to research participants, those that may be disclosed, and those that should not be disclosed. (shrink)

The reported birth of genetically modified twins in late 2018 has given new fuel to debates about the ethics of germline genome editing (GGE). There is a broad consensus among stakeholders that clinical uses of GGE should be temporarily banned as the technology is not yet deemed safe for use in humans. However, the idea of a complete ban is dismissed by many based on the expectation that more research will eventually allow scientists to make the technology safe without having (...) to put humans at risk first. In this article, I will analyse this assumption and argue that it is undermined by recent developments in the postgenomic life sciences. In particular, I will argue that in a postgenomic view of germline editing a complete ban on specific uses of the technology is warranted, because the research needed to assess the safety of these interventions would not be morally defensible. (shrink)

Many working in bioethics today are engaging in forms of normative interpretation concerning the meaningful contexts of relational agency and institutional structures of power. Using the framework of relational bioethics, this article focuses on two significant social practices that are significant for health policy and public health: the practices of solidarity and the practices of care. The main argument is that the affirming recognition of, and caring attention paid to, persons as moral subjects can politically motivate a society in three (...) respects. The recognition of solidarity and the attention of care can prompt progressive change toward a democratic willingness: (a) to provide for equal respect for rights and dignity; (b) to provide the social resources and services needed for just health and well‐being; and (c) to focus its creativity and wealth on the actualization of potential flourishing of each and all. Solidarity is discussed as a morally developmental stance that moves from standing up for another, standing up with another, and standing up as another. Care is discussed as a morally developmental stance that moves from the attentive rehabilitation of another, attentive companionship with and for another, and attentive commitment to another. (shrink)