In the history of genetics, the information-theoretical description of the gene, beginning in the early 1960s, had a significant effect on the concept of the gene. Information is a highly complex metaphor which is applicable in view of the description of substances, processes, and spatio-temporal organisation. Thus, information can be understood as a functional particle of many different language games (some of them belonging to subdisciplines of genetics, as the biochemical language game, some of them belonging to (...) linguistics and informatics). It is this wide covering of different language games that justifies the common description of genes x, y, z as containing information for the phenotypic traits X, Y, Z (or the genome as storage for the information of a whole organism). However, if information is taken as the explanans and phenotypic traits or organisms as the explananda, then a description of the explanandum is of prior importance before the explanans can be characterised. This way of thinking could be useful for future discussions on the strikingly dominant information -metaphor, and the different gene concepts as well. The article illustrates this in two steps. First, a condensed overview on the history of genetics is given, which can be divided into three parts: (1) genetics without genes, (2) genetics with genes, but without information, (3) genetics with genes and information. It is assumed that this provides not only some historical knowledge about the origin of genetics and the introduction of technical terms, but offers at least preliminary insight into the methodological structure of genetic descriptions. In a second step, we redraw Spemann’s disturbation experiments to discuss our thesis that genetic information is not a natural entity, but part of a causality-language game which is secondarily added to the descriptions of interventionalistic practices, viz. experimental approaches. (shrink)

An assessment is offered of the recent debate on information in the philosophy of biology, and an analysis is provided of the notion of information as applied in scientific practice in molecular genetics. In particular, this paper deals with the dependence of basic generalizations of molecular biology, above all the ‘central dogma’, on the so-called ‘informational talk’ (Maynard Smith [2000a]). It is argued that talk of information in the ‘central dogma’ can be reduced to causal claims. In (...) that respect, the primary aim of the paper is to consider a solution to the major difficulty of the causal interpretation of genetic information: how to distinguish the privileged causal role assigned to nucleic acids, DNA in particular, in the processes of replication and protein production. A close reading is proposed of Francis H. C. Crick's On Protein Synthesis (1958) and related works, to which we owe the first explicit definition of information within the scientific practice of molecular biology. Introduction 1.1 The basic questions of the information debate 1.2 The causal interpretation (CI) of biological information and Crick's ‘central dogma’ Crick's definitions of genetic information The main requirement for (CI) Types of causation in molecular biology 4.1 Structural causation in molecular biology 4.2 Nucleic acids as correlative causal factors The ‘central dogma’ without the notion of information Concluding remarks This is a new version of this article as there were errors in the abstract and full text in the previous version. (shrink)

A great part of human genetics research is carried out collecting data and building large databases of biological samples that are in a non-anonymous format. These constitute a valuable resource for future research. The construction of such databases and tissue banks facilitates important scientific progress. However, biobanks have been recognized as ethically problematic because they contain thousands of data that could expose individuals and populations to discrimination, stigmatization and psychological stress if misused. Informed consent is regarded as a cornerstone in (...) the protection of personal autonomy in research involving human subjects. Yet in recent years this fundamental concept has been overwhelmed by the genomic revolution. From a general overview of international literature, it seems evident that informed consent issues have come into sharp focus, in particular in relation to the twin issues of time extension (blanket versus specific/repeated consent) and personal extension (group consent). After an introduction on obtaining informed consent in the context of genetic research, this paper addresses the apparent lack of a single, universal model of obtaining informed consent among populations involved in genetic research and it argues for the need to develop an ethical framework tailored to the specific features of each project. In order to support this theory of contextualizing, the case of a private biotechnology company, SharDNA is presented. The present paper explores the management of its biobank, developed from a genetic research project carried out on isolated populations living on the Italian island of Sardinia. In particular, the paper highlights how the company is tackling the problem of informed consent and other ethical requirements for genetic research, such as the respect of individual privacy, the population approach and the existing Italian legal regulatory framework. (shrink)

The Direction of Medical Ethics The direction bioethics, and specifically medical ethics, will take in the next few years will be crucial. It is an emerging specialty that has attempted a great deal, that has many differing agendas, and that has its own identity crisis. Is it a subspecialty of clinical medicine? Is it a medical reform movement? Is it a consumer pro tection movement? Is it a branch of professional ethics? Is it a ra tionale for legal decisions and (...) agency regulations? Is it something physicians and ethical theorists do constructively together? Or is it a morally concentrated attack on high technology, with the prac titioners of scientific medicine and the medical ethicists in an adversarial role? Is it a conservative endeavor, exhibiting a Frankenstein syn drome in Medical Genetics ("this time, they have gone too far"), or a Clockwork Orange syndrome in Psychotherapy ("we have met hods to make you talk-walk-cry-kill")? Or does it suffer the afflic tion of overdependency on the informal fallacy of the Slippery Slope ("one step down this hill and we will never be able to stop") that remains an informal fallacy no matter how frequently it's used? Is it a restricted endeavor of analytic philosophy: what is the meaning of "disease," how is "justice" used in the allocation of medical resources, what constitutes "informed" or "consent?" Is it applied ethics, leading in clinical practice to some recommenda tion for therapeutic or preventive action? This incomplete list of questions indicates just how complex. (shrink)

Much of the book is aimed at persuading the reader that genes are not ‘the prime movers in all biological processes’ and that ‘postgenomic genes’ are better understood in a functional sense, as ‘things an organism can do with its genome.' With the main argument in place, the authors examine its impact on a number of philosophical debates. I will discuss three of them: causation, information, and reduction.

The exponential growth of genetic knowledge and precision medicine research raises hopes for improved prevention, diagnosis, and treatment options for children with behavioral and psychiatric conditions. Although well-intended, this prospect also raise the possibility — and concern — that behavioral, including psychiatric genetic data would be increasingly used — or misused — outside the clinical context, such as educational settings. Indeed, there are ongoing calls to endorse a “personalized education” model that would tailor educational interventions to children's behavioral (...) and psychiatric genetic makeup. This article explores the justifications for, and prospects and pitfalls of such endeavors. It considers the scientific challenges and highlights the ethical, legal, and social issues that will likely arise should behavioral genetic data become available and are routinely incorporated in student education records. These include: when to disclose students' behavioral and psychiatric genetic profile; whose genomic privacy is protected and by whom; and how students' genetic data may affect education-related decisions. I argue that the introduction of behavioral genetics in schools may overshadow the need to address underlying structural and environmental factors that increase the risk for psychiatric conditions of all students, and that the unregulated use of student behavioral genetic profiles may lead to unintended consequences that are detrimental for individuals, families and communities. Relevant stakeholders — from parents and students to health professionals, educators, and policy-makers — ought to consider these issues before we forge ahead with a genomically informed education system. (shrink)

This chapter contains sections titled: Introduction Human DNA as Cultural Property The Genetic Appropriation of Culture Community Identity, Cultural Offense and Control of Genetic Information Conclusion References.

The prelims comprise: Introduction The Doctrine of Informed Consent I will make you an offer you cannot refuse! Consenting to an Unknown Future Consenting for Future Generations Research without Consent? Conclusion.

From a twenty-first century partnership between bioethics and neuroscience, the modern field of neuroethics is emerging, and technologies enabling functional neuroimaging with unprecedented sensitivity have brought new ethical, social and legal issues to the forefront. Some issues, akin to those surrounding modern genetics, raise critical questions regarding prediction of disease, privacy and identity. However, with new and still-evolving insights into our neurobiology and previously unquantifiable features of profoundly personal behaviors such as social attitude, value and moral agency, the difficulty of (...) carefully and properly interpreting the relationship between brain findings and our own self-concept is unprecedented. Therefore, while the ethics of genetics provides a legitimate starting point - even a backbone - for tackling ethical issues in neuroimaging, they do not suffice. Drawing on recent neuroimaging findings and their plausible real-world applications, we argue that interpretation of neuroimaging data is a key epistemological and ethical challenge. This challenge is two-fold. First, at the scientific level, the sheer complexity of neuroscience research poses challenges for integration of knowledge and meaningful interpretation of data. Second, at the social and cultural level, we find that interpretations of imaging studies are bound by cultural and anthropological frameworks. In particular, the introduction of concepts of self and personhood in neuroimaging illustrates the interaction of interpretation levels and is a major reason why ethical reflection on genetics will only partially help settle neuroethical issues. Indeed, ethical interpretation of such findings will necessitate not only traditional bioethical input but also a wider perspective on the construction of scientific knowledge. (shrink)

In the 4th edition of this best-selling textbook, the authors introduce students to the business of philosophizing, thereby inducting them into the art of reasoning and analyzing key concepts in education. This introductory text, continuously in print for more than thirty years, is a classic in its field. It shows, first and foremost, the importance of philosophy in educational debate and as a background to any practical activity such as teaching. What is involved in the idea of educating a person (...) or the idea of educational success? What, if anything, can be known and how should we organize what we know for curriculum purposes? What are the criteria for establishing the optimum balance between formal and informal teaching techniques? How trustworthy is educational research? In addition to these questions, which strike to the heart of the rationale for the educative process as a whole, the authors explore such concepts as culture, creativity, autonomy, indoctrination, needs, interests and learning by discovery. In this new updated edition, the authors draw on the latest research in genetics to argue that education is uniquely human and is essentially what develops us as humans. Resisting modern tendencies to equate knowledge with opinion, and value judgments with taste, this book leads the reader into the business of philosophizing and champions the cause of reason in education. (shrink)

Griffiths and Stotz’s Genetics and Philosophy: An Introduction offers a very good overview of scientific and philosophical issues raised by present-day genetics. Examining, in particular, the questions of how a “gene” should be defined and what a gene does from a causal point of view, the authors explore the different domains of the life sciences in which genetics has come to play a decisive role, from Mendelian genetics to molecular genetics, behavioural genetics, and evolution. In this review, I highlight (...) what I consider as the two main theses of the book, namely: genes are better conceived as tools; genes become causes only in a context. I situate these two theses in the wider perspective of developmental systems theory. This leads me to emphasize that Griffiths and Stotz reflect very well an on going process in genetics, which I call the “epigenetization” of genetics, i.e., the growing interest in the complex processes by which gene activation is regulated. I then make a factual objection, which is that Griffiths and Stotz have almost entirely neglected the perspective of ecological developmental biology, and more precisely recent work on developmental symbioses, and I suggest that this omission is unfortunate in so far as an examination of developmental symbioses would have considerably strengthened Griffiths and Stotz’s own conclusions. (shrink)

Many new genetic tests are used in clinical practice, and the number of available tests is growing. Two important health policy questions arise as these genetic tests become available. The first question, whether a new test should be made available, has been the focus of much recent discussion. The second question concerns defining the appropriate standards surrounding the use of these tests, including patient selection, education, informed consent, test interpretation and counseling.Genetic tests currently move from the research (...) arena, where strategies are put in place to minimize risks,into the clinical context where the practice of medicine is more variable and the risks to patients less understood. In the research setting, risks can be minimized through safeguards including education, consent, and counseling. The frequency and magnitude of psychosocial and clinical risks canbe assessed. In the clinical setting, however, these safeguards may not be used consistently, creating unknown risksfor patients. (shrink)

Many new genetic tests are used in clinical practice, and the number of available tests is growing. Two important health policy questions arise as these genetic tests become available. The first question, whether a new test should be made available, has been the focus of much recent discussion. The second question concerns defining the appropriate standards surrounding the use of these tests, including patient selection, education, informed consent, test interpretation and counseling.Genetic tests currently move from the research (...) arena, where strategies are put in place to minimize risks,into the clinical context where the practice of medicine is more variable and the risks to patients less understood. In the research setting, risks can be minimized through safeguards including education, consent, and counseling. The frequency and magnitude of psychosocial and clinical risks canbe assessed. In the clinical setting, however, these safeguards may not be used consistently, creating unknown risksfor patients. (shrink)

The introduction of open source in the life sciences is increasingly being suggested as an alternative to patenting. This is an alternative, however, that takes its shape at the intersection of the life sciences and informatics. Numerous examples can be identified wherein open source in the life sciences refers to access, sharing and collaboration as informatic practices. This includes open source as an experimental model and as a more sophisticated approach of genetic engineering. The first section discusses the (...) greater flexibly in regard of patenting and the relationship to the introduction of open source in the life sciences. The main argument is that the ownership of knowledge in the life sciences should be reconsidered in the context of the centrality of DNA in informatic formats. This is illustrated by discussing a range of examples of open source models. The second part focuses on open source in synthetic biology as exemplary for the re-materialization of information into food, energy, medicine and so forth. The paper ends by raising the question whether another kind of alternative might be possible: one that looks at open source as a model for an alternative to the commodification of life that is understood as an attempt to comprehensively remove the restrictions from the usage of DNA in any of its formats. (shrink)

BackgroundClinical ethical practice (CEP) is required for healthcare workers (HCWs) to improve health-care delivery. However, there are gaps between accepted ethical standards and CEP in Ethiopia. There have been limited studies conducted on CEP in the country. Therefore, this study aimed to determine the magnitude and associated factors of CEP among healthcare workers in healthcare facilities in Ethiopia.MethodFrom February to April 2021, a mixed-method study was conducted in 24 health facilities, combining quantitative and qualitative methods. Quantitative (survey questionnaire) and qualitative (...) (semi-structured interviews) data were collected. For quantitative and qualitative data analysis, Stata version 14 and Atlas.ti version 7 were utilized. Multiple logistic regression and thematic analysis for quantative and qualitative respectively used.ResultsFrom a total of 432 study participants, 407 HCWs were involved in the quantitative analysis, 36 participants were involved in five focus group discussions (FGDs), and eleven key informant interviews (KIIs) were involved in the qualitative analysis. The score of good CEP was 32.68%. Similarly, the scores of good knowledge and attitude were 33.50% and 25.31%, respectively. In the multiple logistic regression models, satisfaction with the current profession, availability of functional CECs, compassionate leaders, previously thought clinical ethics in pre-service education and good attitude were significant factors associated with CEP. Among these significant factors, knowledge, compassionate leaders, poor infrastructure, a conducive environment and positive attitudes were also determinants of CEP according to qualitative findings.ConclusionsThe CEP in health care services in Ethiopia is low. Satisfaction with the current profession, functional CECs, positive attitude, compassionate leaders and previously thought clinical ethics were significant factors associated with CEP. The Ministry of Health (MoH) should integrate interventions by considering CECs, compassionate leadership, and positive attitudes and enhance the knowledge of health professionals. Additionally, digitalization, intersectoral collaboration and institutionalization are important for promoting CEP. (shrink)

Introduction The bioethics literature reflects significant interest in and concern with the use of genetic and genomic information in various settings. Because psychiatric treatment and research raises unique ethical, legal, and social issues, we conducted a scoping review of the biomedical, bioethics, and psychology literature regarding the application of genetic and genomic tools to psychiatric disorders (as listed in the DSM-5) and two associated behaviors or symptoms to provide a more detailed overview of the state of (...) the field. Objectives The primary objective was to examine the available bioethics, biomedical, and psychology literature on applying genetic and genomic tools to psychiatric disorders (other than neurodevelopmental disorders) and two behaviors or symptoms sometimes associated with them (aggression or violence and suicidality) to identify the disorders to which these tools have been applied, the contexts in or purposes for which they have been applied, the ethical, legal, or social concerns associated with those uses, and proposed recommendations for mitigating those concerns. Methods We used Arksey and O’Malley’s scoping review framework: (1) identify the research question; (2) identify relevant studies; (3) select studies; (4) chart the data; and (5) collate, summarize, and report results (2005). We relied on Levac et al. to inform our application of the framework (2010). The PRISMA extension for scoping reviews checklist informed our reporting (2018). We searched three electronic databases MEDLINE (PubMed), Embase, and PsycInfo (EbscoHost) for peer-reviewed journal articles in English to identify relevant literature. One author screened the initial results and additional screening was done in consultation with other authors. A data extraction form using DSM-5 diagnostic categories (excluding neurodevelopmental disorders) was developed and two authors independently each reviewed approximately half of the articles. Inter-rater reliability was ensured by double-coding approximately 10% of the papers. An additional author independently coded 10% of the articles to audit the data. Results In 365 coded publications, we identified 15 DSM-5 diagnostic categories in addition to the two pre-selected behaviors or symptoms (aggression or violence and suicidality) to which genetic or genomic tools have been applied. We identified 11 settings in or purposes for which these tools were applied. Twenty-two types of ethical, legal, or social concerns associated with the application of genetic or genomic tools to these disorders or behaviors/symptoms were identified along with 13 practices or policies that could mitigate these concerns. Conclusion Genetic and genomic tools have been applied to a wide range of psychiatric disorders. These raise a range of ethical, legal, and social concerns. Additional research is warranted to better understand the concerns and effective ways to address them. Advancing the literature to identify relevant ethical, legal, or social concerns and solutions to those problems likely requires greater attention to specific applications of genetic or genomic tools to particular psychiatric disorders and associated behaviors/symptoms as well as broad stakeholder engagement. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:IntroductionCynthia B. CohenThe explosion of genetic information in recent years raises a fundamental question for us as individuals and as members of various communities: Have we an obligation to know as much as possible about our genes—or should we bypass genetic information, leaving it hidden? A terrible ambivalence grips us when it comes to our genes. We want to respond to the Socratic call to (...) know ourselves by learning what lies on the minute threads of the chromosomes spun into the nuclei of our cells. At the same time, we fear obtaining that information, for it seems functionally equivalent to the oracle at Delphi, revealing a distinct and dangerous knowledge we would rather not have.What is it about genetic knowledge that creates such ambivalence in us? Genetic knowledge is empowering. It offers us the freedom to shape the contours of our lives and those of our families. At the same time, genetic knowledge is disempowering. It bears a peculiar mark of inevitability, telling us that we have no control over our present or future in important respects. Better to hide from such overbearing information than to suffer the assaults on our freedom it seems to create.We can see this ambivalence about genetic knowledge appearing again and again as the field of genetics has grown. Initially, genetics emerged as a tool for understanding how traits and diseases are passed from generation to generation. We used genetic testing mostly to enhance our personal decision making about reproductive matters. It was at this time that our hesitancy about pursuing such testing first arose, for we feared being put into a position of asking such painful questions as, “Knowing what we do about our genes, should we have children?” As the scope of genetic information expanded, we learned to test for genes that could signal the development of such terrible conditions as Huntington’s disease. The possibility of gaining access to such disturbing information exacerbated our fear of genetic knowledge—to some, the certainty of knowing seemed worse than the uncertainty of not knowing. As genetic research has disclosed genes associated with conditions that might, but not necessarily will occur, the uncertainty of knowing, to some, seems worse than that of not knowing. Further, questions focused on individuals, although still pertinent, are being supplanted by broader questions about families and [End Page vii] social groups. When added to the personal agony that genetic information can engender, the specter of egregious discrimination seems to some to outweigh the value of knowing. As the net is cast further and further from the initial genetic inquiries, the call to halt or control certain kinds of genetic testing is growing increasingly loud.Ambivalence about whether to obtain genetic information hovers over the pages of this issue of the Kennedy Institute of Ethics Journal. The authors address both the promise and the threat of the information to be derived from genetic tests. Each examines a different facet of the problem of knowing that vexes the terrain of genetic technology and proposes blueprints for resolving it.Cynthia B. Cohen opens by examining whether genetic testing should be used to unearth information about conditions children might develop later in life. She challenges the current trend within the professional genetics community to keep such information hidden, claiming that the putative psychosocial burdens of receiving that information are outweighed by the psychosocial benefits. Moreover, Cohen maintains that having such information can enhance, rather than impair, the adult autonomy of children. She offers a framework for assessing whether to test in individual cases and maintains that it is the responsibility of parents to make the final decision for their children.A similar response to our ambivalence about obtaining genetic knowledge is given by Robert Wachbroit. In discussing the dilemma caused by pleiotropic genetic tests—those in which a single gene mutation is involved in several apparently unrelated diseases—he favors fully disclosing their dual nature to patients before testing. Wachbroit’s emphasis on openness extends beyond informed consent recommendations, for he maintains that patients have an obligation to know as much about their genetic proclivities as possible. He goes on to confute the common wisdom that genetic information is... (shrink)

The prelims comprise: Introduction: Informed Consent and the Doctor‐Patient Relationship The Role of Children in the Informed Consent Process Newborn Screening: Mandatory Screening versus Informed Consent Testing Young Children for Early‐onset Genetic Conditions Testing Children for Late‐onset Genetic Conditions Testing Children for Carrier Status Conclusion Acknowledgments.

This chapter contains section titled: Introduction General Scenario for the Transmission of Information and Its Application to Genetics Semiotic Dimensions of Biological Information Syntactic Dimension I: Measuring the Statistical Entropy of Signals and Messages Syntactic Dimension II: Estimating the Algorithmic Complexity of Signals and Messages Semantic Dimension: Classifying the Mutual Complexity of Transmitters and Receivers Acknowledgment References Further Reading.

Background: When a genetic mutation is identified in a family member, internationally, it is usually the proband’s or another responsible family member’s role to disclose the information to at-risk relatives. However, both active and passive non-disclosure in families occurs: choosing not to communicate the information or failing to communicate the information despite intention to do so, respectively. The ethical obligations to prevent harm to at-risk relatives and promote the duty of care by genetic health professionals (...) is in conflict with Privacy laws and professional regulations that prohibits disclosure of information to a third party without the consent of the proband. In New South Wales, Australia, amendments to Privacy legislation permits such disclosure to living genetic relatives with the process defined under guidelines although there is no legal duty to warn. This study assessed NSW GHP’s awareness and experience of the legislation and guidelines. Methods: An online survey collected demographics; theoretical knowledge; clinical scenarios to assess application knowledge; attitudes; confidence; experience with active non-disclosure. A link to correct answers was provided after completion. Knowledge scores above the median for non-parametric data or above the mean for parametric data were classified as ‘good’ or ‘poor’. Chi square tests assessed associations between confidence and knowledge scores. Results: While many of the 37 participants reported reading the guidelines, there was limited awareness of their scope and clinical application; that there is no legal duty to warn; and that the threat does not need to be imminent to warrant disclosure. No association between confidence and ‘good’ theoretical or applied clinical knowledge was identified. Uncertainty of their professional responsibility was identified and in the several case examples of active non-disclosure that were reported this uncertainty reflected the need for further understanding of the guidelines in regard to the processes required before disclosure was initiated. Conclusions: There is a need for further education and training about the guidelines associated with the legislation that would be relevant to support disclosure. The findings may inform future strategies to support introduction of policy changes in other jurisdictions where similar regulatory regimes are introduced. (shrink)

This paper assesses Sarkar's ([2003]) deflationary account of genetic information. On Sarkar's account, genes carry information about proteins because protein synthesis exemplifies what Sarkar calls a ‘formal information system’. Furthermore, genes are informationally privileged over non-genetic factors of development because only genes enter into arbitrary relations to their products (in virtue of the alleged arbitrariness of the genetic code). I argue that the deflationary theory does not capture four essential features of the ordinary concept (...) of genetic information: intentionality, exclusiveness, asymmetry, and causal relevance. It is therefore further removed from what is customarily meant by genetic information than Sarkar admits. Moreover, I argue that it is questionable whether the account succeeds in demonstrating that information is theoretically useful in molecular genetics. Introduction Sarkar's Information System The Pre-theoretic Features of Genetic Information 3.1 Intentionality 3.2 Exclusiveness 3.3 Asymmetry 3.4 Causal relevance Theoretical Usefulness Conclusion CiteULike Connotea Del.icio.us What's this? (shrink)

The overall collection we present in Volume V constitutes a celebration of the approach and values embraced within previous volumes. While those acquainted with previous volumes of Ethics, Law & Society will note some marked differences in how we have gone about the work of editing, our hope is that the approach we bring is seen as enriching the work, and building on what has been a highly successful series. To a large degree, however, it has not been possible to (...) emulate what our rather formidable predecessors have achieved, even if many of the concerns which Jenny and Søren had embraced in previous volumes have continued purchase and find their natural home here too. Jenny and Søren, both prominent bioethicists, not only encouraged contributions which explored ethical and regulatory perspectives around the body, genetic technologies, life sciences and the life course, but also sought to embrace far broader concerns relating to the environment, conflict and war, and to issues which are every bit as crucial to our lived experience, such as the use and management of information. All of these concerns relate to our experience of being human and as such, it seems arbitrary – if one is genuinely concerned with social flourishing – to prioritize the kinds of concerns for inclusion in any given collection to specific themes. (shrink)

At its core, nonideal theory is an attempt not only to address issues of justice, but it also provides us a lens through which we can articulate our limitations as knowers and reasoners, the ways in which we are relational in our autonomy needs, and the ways in which we are deeply dependent upon institutions and social supports for our agency and identities. Bringing this lens into bioethics means shifting our orientation in our scholarship and our practice. This shift will (...) have implications in how bioethical evaluations are taken up and played out in policies, institutional structures that inform the clinical encounter, and avenues for protection and redress for marginalized and vulnerable populations. It will also allow theorists and researchers to interrogate the status quo, revealing how many standard policies and practices are embedded in social and institutional arrangements that privilege the few or are built on exclusionary norms. The path forward, and the aim of this volume, is to extend the scholarship of nonideal approaches to bioethics. The volume is divided into two main parts. The first is focused on philosophically unpacking nonideal theory as an approach in bioethics. The second offers applications of nonideal theory in environmental ethics, healthcare ethics, public heath ethics, and genetic ethics. Our collective aim is to expand what has been considered nonideal bioethics. The history of nonideal theory has as its point of reference a turn away from Rawlsian justice, but the future of nonideal theory is ripe with possibilities. (shrink)

The development of the CRISPR/Cas9 gene editing system has generated new possibilities for the use of gene drive constructs to reduce or suppress mosquito populations to levels that do not support disease transmission. Despite this prospect, social resistance to genetically modified organisms remains high. Gene drive open field research thus raises important questions regarding what is owed to those who may not consent to such research, or those could be affected by the proposed research, but whose consent is not solicited. (...) The precise circumstances under which informed consent must be obtained, and from whom, requires careful consideration. Furthermore, appropriate engagement processes should be central to any introduction of genetically modified mosquitos in proposed target settings. In this work, international guidance documents on informed consent and engagement are reviewed and applied to the genetically modified mosquito research context. Five analogous research endeavours that involve area-wide / open field experiments are reviewed. The approach of each in respect to the solicitation of individual informed consent and community engagement are highlighted. While the solicitation of individual informed consent in host settings of gene drive field trials may not be possible or feasible in some instances, local community and stakeholder engagement will be key to building trust towards the proposed conduct of such research. In this regard, the approaches taken by investigators and sponsors of political science field research and weather modification field research should be avoided. Rather, proponents of gene drive field research should look to the Eliminate Dengue field trials, cluster randomised trials, and pragmatic clinical trials for guidance regarding how the solicitation of individual informed consent of host communities ought to be managed, and how these communities ought to be engaged. (shrink)

The development of the CRISPR/Cas9 gene editing system has generated new possibilities for the use of gene drive constructs to reduce or suppress mosquito populations to levels that do not support disease transmission. Despite this prospect, social resistance to genetically modified organisms remains high. Gene drive open field research thus raises important questions regarding what is owed to those who may not consent to such research, or those could be affected by the proposed research, but whose consent is not solicited. (...) The precise circumstances under which informed consent must be obtained, and from whom, requires careful consideration. Furthermore, appropriate engagement processes should be central to any introduction of genetically modified mosquitos in proposed target settings. In this work, international guidance documents on informed consent and engagement are reviewed and applied to the genetically modified mosquito research context. Five analogous research endeavours that involve area-wide / open field experiments are reviewed. The approach of each in respect to the solicitation of individual informed consent and community engagement are highlighted. While the solicitation of individual informed consent in host settings of gene drive field trials may not be possible or feasible in some instances, local community and stakeholder engagement will be key to building trust towards the proposed conduct of such research. In this regard, the approaches taken by investigators and sponsors of political science field research and weather modification field research should be avoided. Rather, proponents of gene drive field research should look to the Eliminate Dengue field trials, cluster randomised trials, and pragmatic clinical trials for guidance regarding how the solicitation of individual informed consent of host communities ought to be managed, and how these communities ought to be engaged. (shrink)

Bonnie Rochman's first book, The Gene Machine: How Genetic Technologies Are Changing the Way We Have Kids—and the Kids We Have, is an impressive work of science journalism that provides a compelling introduction to some of the most important ethical questions raised by genetic technologies. Written for a general audience, The Gene Machine is a model for how to approach contentious ethical questions with equanimity, compassion, and, most importantly, accurate information. Rochman elucidates the facts, gives voice (...) to the most relevant interested parties, including families and experts, and lets readers draw their own conclusions. There are multiple points of entry for interested ethicists who might want to push... (shrink)

Standard versions of the requirement of informed consent state that patients who are offered to enter a clinical trial of a medical procedure should be informed about risks and possible benefits of this procedure (compared to available alternatives) in order to facilitate a rational decision whether or not to participate. However, in many real cases where new medical procedures are to be clinically tested for the first time the information available for such communication to prospective patients is very scarce, (...) vague and/or uncertain. This phenomenon is illustrated by the clinical introduction of new procedures in reproductive medicine, such as preimplantation genetic diagnosis (PGD). Regarding such procedures, it has ben argued that, in such cases, the quality of the available information may be too low for the obtaining of informed consent to be possible, even if it is successfully communicated. Others, instead, holds that informed consent may always be obtained regardless of the quality of the available information. Unfortunately, the standard litterature on informed consent give no clue as to which of these interpretations is correct. This issue is explored by connecting the concept of informed consent to ethical ideas of respect for autonomy and ideas of rational decision making. It is argued, first, that low quality of available information regarding the risks and possible benefits of a medical procedure may indeed make the obtaining of informed consent from patients to undergo this procedure impossible even in theory. However, it is also argued that whether or not this is the case must be relativized to the actual needs and deires of individual patients. Thus, regarding one and the same procedure, informed consent may be impossible to obtain from some patients due to the low quality of the available information regarding this procedure, but still be possible to obtain from other patients. (shrink)

This chapter contains sections titled: You and Your Genes Your Patented Parts The “I, Robot, Your Robot” Scenario The Elephant Man Scenario There's Gold in Them Thar Genes! Bio‐Prospecting and Social Justice Discovery, not Invention Genetic Diversity and Cultural Commons Are You Your Genes? Genes, Information, and Privacy Practical Considerations: Gene Patents and Innovation The Road Ahead.

Informed consent is a key condition for prenatal screening programmes to reach their aim of promoting reproductive autonomy. Reaching this aim is currently being challenged with the introduction of non-invasive prenatal testing (NIPT) in first-trimester prenatal screening programmes: amongst others its procedural ease—it only requires a blood draw and reaches high levels of reliability—might hinder women’s understanding that they should make a personal, informed decision about screening. We offer arguments for a renewed recognition and use of informed consent compared (...) to informed choice, and for a focus on value-consistent choices and personalized informational preferences. We argue for a three-step counselling model in which three decision moments are distinguished and differently addressed: (1) professionals explore women’s values concerning whether and why they wish to know whether their baby has a genetic disorder; (2) women receive layered medical-technical information and are asked to make a decision about screening; (3) during post-test counselling, women are supported in decision-making about the continuation or termination of their pregnancy. This model might also be applicable in other fields of genetic (pre-test) counselling, where techniques for expanding genome analysis and burdensome test-outcomes challenge counselling of patients. (shrink)

Informed consent is a key condition for prenatal screening programmes to reach their aim of promoting reproductive autonomy. Reaching this aim is currently being challenged with the introduction of non‐invasive prenatal testing (NIPT) in first‐trimester prenatal screening programmes: amongst others its procedural ease—it only requires a blood draw and reaches high levels of reliability—might hinder women’s understanding that they should make a personal, informed decision about screening. We offer arguments for a renewed recognition and use of informed consent compared (...) to informed choice, and for a focus on value‐consistent choices and personalized informational preferences. We argue for a three‐step counselling model in which three decision moments are distinguished and differently addressed: (1) professionals explore women’s values concerning whether and why they wish to know whether their baby has a genetic disorder; (2) women receive layered medical‐technical information and are asked to make a decision about screening; (3) during post‐test counselling, women are supported in decision‐making about the continuation or termination of their pregnancy. This model might also be applicable in other fields of genetic (pre‐test) counselling, where techniques for expanding genome analysis and burdensome test‐outcomes challenge counselling of patients. (shrink)

Bioethical issues remain front-page news, with debate continuing to rage over issues including genetic modification, animal cloning, and "designer babies." With public opinion often driven by media speculation, how can we ensure that informed decisions regarding key bioethical issues are made in a reasoned, objective way? Ideal for students new to the subject, Bioethics: An Introduction for the Biosciences offers a balanced, objective introduction to the field. With a focus on developing powers of reasoning and judgment, the (...) book presents different perspectives on common themes in an impartial way, thereby fostering debate and discussion. The opening section, "The Ethical Groundwork," introduces students to the nature of bioethics and ethical theory. The book goes on to cover a broad range of bioethical issues relating to people, animals, and food, before concluding with an overview of bioethics in practice. Features: * The broadest, most balanced textbook on bioethics available, offering students just the right mix of science and philosophy as well as a clear, objective introduction to the subject * Presents different perspectives on common themes in order to encourage students to question, evaluate, and form their own opinions * Incorporates many useful pedagogical tools including self-assessment questions, topics for discussion, and exercises * Includes references for further reading and useful web sites * A companion website offers resources for both students and instructors. (shrink)

Purpose – This paper aims to explore similarities and differences between robots, invasive biological species, and genetically modified organisms. These comparisons are designed to better understand the potential effects of robots on human society. Design/methodology/approach – This paper applies established ideas in one discipline – biology – to issues that are less well understood, but actively being studied in another discipline – science and technology studies. Findings – Robots entering human society in large numbers share many of the characteristics of (...) an invasive species entering a new ecosystem. The authors also find that robots have several characteristics that are similar to a genetically modified organism. Taken together, these similarities suggest that society should be cautious about the introduction of large numbers of robots in a short period of time. Originality/value – The approach taken here to assess robots in society by these analogies to ecological processes is, to the authors' knowledge, novel. Applying ideas from a better-known area to a less well-known area is routine in philosophy, but these particular analogies have not yet been carefully articulated in the literature. (shrink)

A current trend in bioethics considers genetic information as family property. This paper uses a logical approach to critically examine Matthew Liao’s proposal on the familial nature of genetic information as grounds for the duty to share it with relatives and for breach of confidentiality by the geneticist. The authors expand on the topic by examining the relationship between the arguments of probability and the familial nature of genetic information, as well as the concept (...) of harm in the context of genetic risk. Lastly, they examine the concept of harm in relation to the type of situations w the potential recipient of the information is not the person directly affected by the risk. (shrink)

Communicating genetic information to family members has been the subject of an extensive debate recently in bioethics and law. In this context, the extent of the relatives’ right to know and not to know is examined. The mainstream in the bioethical literature adopts a liberal perception of patient autonomy and offers a utilitarian mechanism for solving familial tensions over genetic information. This reflects a patient-centred approach in which disclosure without consent is justified only to prevent serious (...) harm or death to others. Based on a legal and bioethical analysis on the one hand, and an examination of empirical studies on the other, this paper advocates the adoption of a relational perception of autonomy, which, in the context of genetics, takes into account the effect that any decision—whether to disclose or not to disclose—will have on the familial relationship and the dynamics of the particular family. Adding this factor to the criteria usually advocated by lawyers and ethicists will facilitate reaching a sensitive decision, which recognises the various interests of family members beyond the risk to physical health. Taking this factor into account will require a process of deliberation both between doctors and patients, and in the family. It will also require a relaxation of medical confidentiality, as the family rather than the patient is gradually perceived as the unit of care. Moreover, adopting such a relational approach will accord with current views of doctors and patients who base their decision primarily on the nature of the familial relationship. (shrink)

John Maynard Smith has defended against philosophical criticism the view that developmental biology is the study of the expression of information encoded in the genes by natural selection. However, like other naturalistic concepts of information, this ‘teleosemantic’ information applies to many non-genetic factors in development. Maynard Smith also fails to show that developmental biology is concerned with teleosemantic information. Some other ways to support Maynard Smith’s conclusion are considered. It is argued that on any definition (...) of information the view that development is the expression of genetic information is misleading. Some reasons for the popularity of that view are suggested. (shrink)

Darwinian evolutionary theory has two key terms, variations and biological selection, which finally lead to survival of the fittest variant. With the rise of molecular genetics, variations were explained as results of error replications out of the genetic master templates. For more than half a century, it has been accepted that new genetic information is mostly derived from random error-based events. But the error replication narrative has problems explaining the sudden emergence of new species, new phenotypic traits, (...) and genome innovations as a sudden single event. Meanwhile, it is recognized that errors cannot explain the evolution of genetic information, genetic novelty, and complexity. Now, empirical evidence establishes the crucial role of non-random genetic content editors, such as viruses, diversity generating retroelements, and other RNA networks, to produce new genetic information, complex regulatory control, inheritance vectors, genetic identity, immunity, new sequence space, evolution of complex organisms, and evolutionary transitions. (shrink)

In an article recently published in this journal, I raised a puzzle about the control of genetic information, suggesting a situation in which it might turn out that we have a duty to remain in ignorance about at least some aspects of our own genome. In this article, I propose a way that would make sense of how the puzzle arises, and offer a way to resolve it and similar puzzles in future: in essence, we would consider (...) class='Hi'>genetic information to be something the distribution of which may be more or less just. We would not know in advance what a just distribution would be, though, and in some cases there might still be a justice-based reason to deny a person genetic information about himself. However, others might also have justice-based claims to be able to access that information. This suggests that there is a possible world in which one person is entitled to at least some genetic information about another, while that other person—to whom the information refers—is not, and that this world would be just. (shrink)

The use of genetic testing has prompted the question of whether insurance companies should be able to use predictive genetic test results (GTRs) in their risk classification of clients. While some jurisdictions have passed legislation to prohibit this practice, the UK has instead adopted a voluntary code of practice that merely restricts the ways in which insurance companies may use GTRs. Critics have invoked various theories of justice to argue that this approach is unfair. However, as well as (...) sometimes relying on somewhat idealised assumptions, these analyses have tended to invoke theories that have wide-ranging and highly revisionary implications for insurance. Moreover, they fail to adequately engage with a conception of justice that plausibly undergirds the status quo approach to insurance in the UK. I argue that it is a mistake to simply invoke a single contestable theory in seeking to develop sound policy on the use of GTRs in insurance. To that end, in this paper, I outline three plausible principles of justice that policy on this issue ought to balance: A principle of equity, a principle of equal access and a principle of need. In doing so, I shall offer a pluralist justice-based argument in support of the spirit, if not the precise letter, of the UK approach. (shrink)

The concept of genetic information is controversial because it attributes semantic properties to what seem to be ordinary biochemical entities. I argue that nucleic acids contain information in a semantic sense, but only about a limited range of effects. In contrast to other recent proposals, however, I analyze genetic information not in terms of a naturalized account of biological functions, but instead in terms of the way in which molecules determine their products during processes known (...) as template-directed syntheses. I argue that determining an outcome in a certain way is constitutive for being an instruction. On this account, the content of genetic information is identified with the template's properties, which determine the product in the way constitutive for instructions. (shrink)

The role of values in scientific research has become an important topic of discussion in both scholarly and popular debates. Pundits across the political spectrum worry that research on topics like climate change, evolutionary theory, vaccine safety, and genetically modified foods has become overly politicized. At the same time, it is clear that values play an important role in science by limiting unethical forms of research and by deciding what areas of research have the greatest relevance for society. Deciding how (...) to distinguish legitimate and illegitimate influences of values in scientific research is a matter of vital importance.Recently, philosophers of science have written a great deal on this topic, but most of their work has been directed toward a scholarly audience. This book makes the contemporary philosophical literature on science and values accessible to a wide readership. It examines case studies from a variety of research areas, including climate science, anthropology, chemical risk assessment, ecology, neurobiology, biomedical research, and agriculture. These cases show that values have necessary roles to play in identifying research topics, choosing research questions, determining the aims of inquiry, responding to uncertainty, and deciding how to communicate information. Kevin Elliott focuses not just on describing roles for values but also on determining when their influences are actually appropriate. He emphasizes several conditions for incorporating values in a legitimate fashion, and highlights multiple strategies for fostering engagement between stakeholders so that value influences can be subjected to careful and critical scrutiny. (shrink)

We will analyse the representations and conceptualisation of genetics and genetic information in bioethical discourse. Genetics and genetic information is widely believed to be revolutionizing medicine and is sometimes misconceived as having a high predictive value compared to traditional diagnostics. We will attempt to present the inherent limitations of genetic information within its health care context. We␣will also argue against the exceptional treatment of genetic information that seems to govern bioethical reflection and (...) regulatory approaches. And finally, we will make the claim that geneticization should be seen as a more serious threat to our privacy, autonomy and freedom, than genetic discrimination. (shrink)

Rights, autonomy, privacy, and confidentialityare concepts commonly used in discussionsconcerning genetic information. When theseconcepts are thought of as denoting absolutenorms and values which cannot be overriden byother considerations, conflicts among themnaturally occur.In this paper, these and related notions areexamined in terms of the duties and obligationsmedical professionals and their clients canhave regarding genetic knowledge. It issuggested that while the prevailing idea ofautonomy is unhelpful in the analysis of theseduties, and the ensuing rights, an alternativereading of personal self-determination (...) canprovide a firmer basis for ethical guidelinesand policies in this field. (shrink)

The sequence of nucleotide bases occurring in an organism’s DNA is often regarded as a codescript for its construction. However, information in a DNA sequence can only be regarded as a codescript relative to an operational biochemical machine, which the information constrains in such a way as to direct the process of construction. In reality, any biochemical machine for which a DNA codescript is efficacious is itself produced through the mechanical interpretation of an identical or very similar codescript. (...) In these terms the origin of life can be described as a bootstrap process involving the simultaneous accumulation of genetic information and the generation of a machine that interprets it as instructions for its own construction. This problem is discussed within the theoretical frameworks of thermodynamics, informatics and self-reproducing automata, paying special attention to the physico-chemical origin of genetic coding and the conditions, both thermodynamic and informatic, that a system must fulfil in order for it to sustain semiosis. The origin of life is equated with biosemiosis. (shrink)

Controversies about optimality models and adaptationist methodologies have animated the discussions of evolutionary theory in recent years. The sociobiologists, following the lead of E. O. Wilson, have argued that if Darwinian natural selection can be reliably expected to produce the best possible type of organism - one that optimizes the value of its genetic contribution to future generations - then evolution becomes a powerfully predictive theory as well as an explanatory one. The enthusiastic claims of the sociobiologists for the (...) predictability and applicability that the optimalist approach engenders have been met with severe criticism by Richard C. Lewontin, Stephen Jay Gould, and other biologists and philosophers of biology. These original essays take up both sides of the controversy over the role of optimality models in evolutionary biology, providing a refreshingly insightful and balanced discussion of optimality issues by an interdisciplinary group of leading philosophers of biology, biologists, psychologists, anthropologists, and an economist. They focus on the current state of adaptationist and optimalist methodology in evolutionary theory, and on the possibility of extending such methodology to the human sciences, especially those of psychology and anthropology. Introduction / John Dupre -- Part 1. Methodological questions. Simple models of complex phenomena: the case of cultural evolution / Peter J. Richerson and Robert Boyd -- Natural selection and the null hypothesis / John Beatty -- Why not the best? / Philip Kitcher -- Part 2. Evolution and optimality. What is adaptationism? / Elliot Sober -- How to model evolution / John Maynard Smith -- Comments on Maynard Smith’s "How to Model Evolution" / Elliot Sober -- Reply to Sober / John Maynard Smith -- The shape of optimality / Richard C. Lewontin -- Part 3. Applications. Evolutionary ecology and the optimality assumption / John M. Emlen -- Optimality theory and behavior / John E.R. Staddon -- Part 4. Applications to human behavior. Optimization theory in anthropology: applications and critiques / Eric Alden Smith -- Evolution of a mesh between principles of the mind and regularities of the world / Roger N. Shepard -- From evolution to behavior: evolutionary psychology as the missing link / Leda Cosmides and John Tooby -- On the emotions as guarantors of threats and promises / Jack Hirschleifer -- Human kinds / John Dupre. (shrink)

Computing plays an important role in genetics (and vice versa).Theoretically, computing provides a conceptual model for thefunction and malfunction of our genetic machinery. Practically,contemporary computers and robots equipped with advancedalgorithms make the revelation of the complete human genomeimminent – computers are about to reveal our genetic soulsfor the first time. Ethically, computers help protect privacyby restricting access in sophisticated ways to genetic information.But the inexorable fact that computers will increasingly collect,analyze, and disseminate abundant amounts of (...) class='Hi'>genetic informationmade available through the genetic revolution, not to mentionthat inexpensive computing devices will make genetic informationgathering easier, underscores the need for strong and immediateprivacy legislation. (shrink)

In the paper ‘Genetic information, insurance, and a pluralistic approach to justice’, Jonathan Pugh1 develops an argument from unresolved pluralism in our theories of justice, via the pluralism this occasions in relation to the specific question of the use of genetic test results in insurance underwriting, to the conclusion that the UK regulatory approach in relation to the use of GTRs in insurance is broadly correct.1 Pugh’s argument is wide-ranging and I cannot provide a complete critique of (...) it in this short comment, but I will gesture towards some strands of the argument that are potentially problematic. The first potential problem in the argument is that Pugh bases his argument on a very extensive range of accounts of justice, including pure maximising consequentialism, strict egalitarianism and libertarianism, among many others. If these are all accounts of justice, it is not strange that there is pluralism of conclusions in relation to a specific question of justice or discrimination, such as the use of GTRs in the underwriting of specific kinds of insurance contracts. Pugh’s range, for instance, includes accounts of justice that deny the direct importance of distributive concerns as well as accounts that see distributive concerns as crucial. These accounts disagree not only about the answer to Pugh’s question but also about …. (shrink)

RNA localization is a powerful strategy used by cells to localize proteins to subcellular domains and to control protein synthesis regionally. In germ cells, RNA targeting has profound implications for development, setting up polarities in genetic information that drive cell fate during embryogenesis. The frog oocyte offers a useful system for studying the mechanism of RNA localization. Here, we discuss critically the process of RNA localization during frog oogenesis. Three major pathways have been identified that are temporally and (...) spatially separated in oogenesis. Each pathway uses a different mechanism to effect RNA localization. In some cases, localization elements within the 3' untranslated region have been identified and have provided unique insights into the localization process. This important field is still in its infancy, however, and much remains to be learned. BioEssays 21:546–557, 1999. © 1999 John Wiley & Sons, Inc. (shrink)