Since the growth cone was first described a century ago by Cajal, considerable effort has been directed towards understanding the mechanisms responsible for its guidance. Traditionally, attention has focussed on the role of adhesive molecules in determining neural development. Recently, it has become apparent that inhibitory interactions may play a crucial part in axonal navigation. A common feature of inhibition seen in three model systems (peripheral nerve segmentation, retinotectal mapping and CNS/PNS segregation) is a collapse of the motile structures of (...) the growth cone. It is increasingly clear that the identification of molecular mechanisms of inhibition, as well as those of adhesion, will be of fundamental importance to understanding neural development. (shrink)

The legal requirements and justifications for collecting patient-identifiable data without patient consent were examined. The impetus for this arose from legal and ethical issues raised during the development of a population-based disease register. Numerous commentaries and case studies have been discussing the impact of the Data Protection Act 1998 and Caldicott principles of good practice on the uses of personal data. But uncertainty still remains about the legal requirements for processing patient-identifiable data without patient consent for research purposes. This is (...) largely owing to ignorance, or misunderstandings of the implications of the common law duty of confidentiality and section 60 of the Health and Social Care Act 2001. The common law duty of confidentiality states that patient-identifiable data should not be provided to third parties, regardless of compliance with the DPA1998. It is an obligation derived from case law, and is open to interpretation. Compliance with section 60 ensures that collection of patient-identifiable data without patient consent is lawful despite the duty of confidentiality. Fears regarding the duty of confidentiality have resulted in a common misconception that section 60 must be complied with. Although this is not the case, section 60 support does provide the most secure basis in law for collecting such data. Using our own experience in developing a disease register as a backdrop, this article will clarify the procedures, risks and potential costs of applying for section 60 support. (shrink)

Early last year, the GenEthics Consortium (GEC) of the Washington Metropolitan Area convened at George Washington University to consider a complex case about genetic testing for Alzheimer disease (AD). The GEC consists of scientists, bioethicists, lawyers, genetic counselors, and consumers from a variety of institutions and affiliations. Four of the 8 co-authors of this paper delivered presentations on the case. Supplemented by additional ethical and legal observations, these presentations form the basis for the following discussion.

A 2011 National Academies of Sciences report called for an “Information Commons” and a “Knowledge Network” to revolutionize biomedical research and clinical care. We interviewed 41 expert stakeholders to examine governance, access, data collection, and privacy in the context of a medical information commons. Stakeholders' attitudes about MICs align with the NAS vision of an Information Commons; however, differences of opinion regarding clinical use and access warrant further research to explore policy and technological solutions.

Aims: To describe individuals’ perceptions of the activities that take place within the cancer genetics clinic, the relationships between these activities and how these relationships are sustained. Design: Qualitative interview study. Participants: Forty individuals involved in carrying out cancer genetics research in either a clinical (n = 28) or research-only (n = 12) capacity in the UK. Findings: Interviewees perceive research and clinical practice in the subspecialty of cancer genetics as interdependent. The boundary between research and clinical practice is described (...) as vague or blurred, and this ambiguity is regarded as being sustained by a range of methodological, ethical and economic factors. The implications of these findings for the “therapeutic misconception” are explored. It is argued that while research participation is seen as having therapeutic benefit for individual patients, the interviewees are not labouring under any misconceptions about the relationship between research and clinical care. It is suggested that concepts such as the “therapeutic misconception” may have less relevance in highly technological specialities that are characterised by a developing evidence base. (shrink)

Design: Qualitative interview study. Participants: Fifty-nine patients with a family history of cancer who attend a regional cancer genetics clinic in the UK were interviewed about their current and previous research experiences. Findings: Interviewees gave a range of explanations for research participation. These were categorised as social—research participation benefits the wider society by progressing science and improving treatment for everyone; familial—research participation may improve healthcare and benefit current or future generations of the participant’s family; and personal—research participation provides therapeutic or (...) non-therapeutic benefits for oneself. Conclusions: We discuss the distinction drawn between motives for research participation focused upon self and others, and observe that personal, social and familial motives can be seen as interdependent. For example, research participation that is undertaken to benefit others, particularly relatives, may also offer a number of personal benefits for self, such as enabling participants to feel that they have discharged their social or familial obligations. We argue for the need to move away from simple, static, individualised notions of research participation to a more complex, dynamic and inherently social account. (shrink)

PURPOSE: To evaluate the effects of social support on comprehension and recall of consent form information in a study of Parkinson disease patients and their caregivers.DESIGN and METHODS: Comparison of comprehension and recall outcomes among participants who read and signed the consent form accompanied by a family member/friend versus those of participants who read and signed the consent form unaccompanied. Comprehension and recall of consent form information were measured at one week and one month respectively, using Part A of the (...) Quality of Informed Consent Questionnaire .RESULTS: The mean age of the sample of 143 participants was 71 years . Analysis of covariance was used to compare QuIC scores between the intervention group and control group . In the 1-week model, no statistically significant intervention effect was found . However, the intervention status by patient status interaction was statistically significant . In the 1-month model, no statistically significant intervention effect was found . Again, however, the intervention status by patient status interaction was statistically significant . At both time periods, intervention group patients scored higher on the QuIC than did intervention group caregivers, and control group patients scored lower on the QuIC than did control group caregivers.IMPLICATIONS: Social support played a significant role in enhancing comprehension and recall of consent form information among patients. (shrink)

Writing about the intellectual development of a philosopher is a delicate business. My own endeavor to reinterpret the influence of Hegel on Dewey troubles some scholars because, they believe, I make Dewey seem less original.1 But if, like Dewey, we overcome Cartesian dualism, placing the development of the self firmly within a complex matrix of social processes, we are forced to reexamine, without necessarily surrendering, the notion of individual originality, or what Neil Gross calls “discourse[s] of creative genius.”2 To use (...) a mundane example, I can recall several conversations with Dewey scholars about his dislike for his home state of Vermont, all of which revolved around personal reasons he may.. (shrink)

Graphical AbstractCephalopods provide a unique model system to investigate how organismal novelties evolve. In article number 1900073, Elena A. Ritschard et al. discuss how co-evolutionary signatures among various genomic characters have contributed to cephalopod organismal novelties and can be used to dissect their functional organization. Cover illustration by Hannah Schmidbaur.

How genomic innovation translates into organismal organization remains largely unanswered. Possessing the largest invertebrate nervous system, in conjunction with many species‐specific organs, coleoid cephalopods (octopuses, squids, cuttlefishes) provide exciting model systems to investigate how organismal novelties evolve. However, dissecting these processes requires novel approaches that enable deeper interrogation of genome evolution. Here, the existence of specific sets of genomic co‐evolutionary signatures between expanded gene families, genome reorganization, and novel genes is posited. It is reasoned that their co‐evolution has contributed to (...) the complex organization of cephalopod nervous systems and the emergence of ecologically unique organs. In the course of reviewing this field, how the first cephalopod genomic studies have begun to shed light on the molecular underpinnings of morphological novelty is illustrated and their impact on directing future research is described. It is argued that the application and evolutionary profiling of evolutionary signatures from these studies will help identify and dissect the organismal principles of cephalopod innovations. By providing specific examples, the implications of this approach both within and beyond cephalopod biology are discussed. (shrink)

Understanding the clinical significance of variants associated with hereditary cancer risk requires access to a pooled data resource or network of resources—a “cancer gene variant commons”—incorporating representative, well-characterized genetic data, metadata, and, for some purposes, pathways to case-level data. Several initiatives have invested significant resources into collecting and sharing cancer gene variant data, but further progress hinges on identifying and addressing unresolved policy issues. This commentary provides insights from a modified policy Delphi process involving experts from a range of stakeholder (...) groups involved in the data-sharing ecosystem. In particular, we describe policy issues and options generated by Delphi participants in five domains critical to the development of an effective cancer gene variant commons: incentives, financial sustainability, privacy and security, equity, and data quality. Our intention is to stimulate wider discussion and lay a foundation for further work evaluating policy options more in-depth and mapping them to those who have the power to bring about change. Addressing issues in these five domains will contribute to a cancer gene variant commons that supports better care for at-risk and affected patients, empowers patient communities, and advances research on hereditary cancers. (shrink)

Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons. We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.

We are printing, by kind permission of the Law Commission, two sections of the report of the Law Commission on injuries to unborn children. This report was the result of a request to the Law Commission by the Lord Chancellor at the time (Lord Hailsham of Saint Marylebone) to advise on `what the nature and extent of civil liability for antenatal injury should be'. The Law Commission followed its usual practice in such circumstances of consulting various bodies and obtaining expert (...) advice on the subject and then embodying the results in a working paper (Working Paper No. 47 - injuries to unborn children) published on 19 January 1973, which preceded their report (Cmnd 5709). Meanwhile a Royal Commission is considering much wider issues of civil liability for injury (including antenatal injury) but the terms of reference for the Law Commission were much narrower and confined to the position of children injured before birth. In the section relating to the present law the report makes it clear that it is probable that liability under the common law already exists. The Scottish Law Commission has also issued a report (Cmnd 5371). They were given different terms of reference and came to somewhat different conclusions. We are printing from this long report the paragraphs discussing the medical background and the summary of recommendations. As will be evident on reading the paragraphs on the medical background to injuries to the unborn child, events are moving very rapidly, particularly in the study of congenital defects and the effects of drugs but the problems of proof present great difficulty. Other causes of injury to the unborn child are better known to the general public: for example, those following the illness, infection and disease of the mother during pregnancy, injury caused in attempted termination of pregnancy and the risks resulting from the mother's condition. The summary of the recommendations sets out very clearly the legal position of the unborn child, as the Law Commission sees it, arising from injury before birth, the final conclusion being that `legislation is desirable'. These extracts from the report, apart from their intrinsic interest, lead on to the paper by Mr Kennedy and Dr Edwards in which they set out their criticisms of it, and provide quick references to the original document. (shrink)

While new generations of implantable brain computer interface devices are being developed, evidence in the literature about their impact on the patient experience is lagging. In this article, we address this knowledge gap by analysing data from the first-in-human clinical trial to study patients with implanted BCI advisory devices. We explored perceptions of self-change across six patients who volunteered to be implanted with artificially intelligent BCI devices. We used qualitative methodological tools grounded in phenomenology to conduct in-depth, semi-structured interviews. Results (...) show that, on the one hand, BCIs can positively increase a sense of the self and control; on the other hand, they can induce radical distress, feelings of loss of control, and a rupture of patient identity. We conclude by offering suggestions for the proactive creation of preparedness protocols specific to intelligent—predictive and advisory—BCI technologies essential to prevent potential iatrogenic harms. (shrink)

THE PROBLEM OF HUMAN FREEDOM is one of the central and recurring issues of philosophy. Kant considered it to be at the heart of his own philosophy, the "keystone," as he called it, of the whole architecture of his system of pure reason, both of practical reason as well as of speculative reason. However, the notorious difficulties of interpreting Kant's philosophy in general, and his doctrine of freedom in particular, have made most of Kant's accomplishments in this area relatively inaccessible (...) to contemporary philosophers. In this paper I will discuss the problem of human freedom from a Kantian perspective and will make use of some of what I consider to be Kant's most significant analyses and arguments. It is not my intention to try to preserve, illuminate, or render consistent everything which Kant said about freedom; such an endeavor would probably be in vain. I do, however, want to pay him the respect of believing that there is much that is worth preserving in what he says about freedom, and that is, with a modest amount of reconstruction, quite relevant to the way many of us think about the problem of freedom today. (shrink)

The right to refuse medical intervention is well established, but it remains unclear how best to respect and exercise this right in life support. Contemporary ethical guidelines for critical care give ambiguous advice, largely because they focus on the moral equivalence of withdrawing and withholding care without confronting the very real differences regarding who is aware and informed of intervention options and how patient values are communicated and enacted. In withholding care, doctors typically withhold information about interventions judged too futile (...) to offer. They thus retain greater decision-making burden and face weaker obligations to secure consent from patients or proxies. In withdrawing care, there is a clearer imperative for the doctor to include patients in decisions, share information and secure consent, even when continued life support is deemed futile. How decisions to withhold and withdraw life support differ ethically in their implications for positive versus negative interpretations of patient autonomy, imperatives for consent, definitions of futility and the subjective evaluation of benefits and burdens of life support in critical care settings are explored. Professional reflection is required to respond to trends favouring a more positive interpretation of patient autonomy in the context of life support decisions in critical care. Both the bioethics and critical care communities should investigate the possibilities and limits of growing pressure for doctors to disclose their reasoning or seek patient consent when decisions to withhold life support are made. (shrink)

While rooted in careful study of Mead’s original writings and transcribed lectures and the historical context in which that work was carried out, the papers in this volume have brought Mead’s work to bear on contemporary issues in metaphysics, epistemology, cognitive science, and social and political philosophy.

This paper presents an overview of the dimensions of unsafe motherhood, contrasting data from economically developed countries with some from developing countries. It addresses many common factors that shape unsafe motherhood, identifying medical, health system and societal causes, including women's powerlessness over their reproductive lives in particular as a feature of their dependent status in general. Drawing on perceptions of Jonathan Mann, it focuses on public health dimensions of maternity risks, and equates the role of bioethics in conscientious medical care (...) to that of human rights in public health care. The microethics of medical care translate into the macroethics of public health, but the transition compels some compromise of personal autonomy, a key feature of Western bioethics, in favour of societal analysis. Religiously‐based morality is seen to have shaped laws that contribute to unsafe motherhood. Now reformed in former colonizing countries of Europe, many such laws remain in effect in countries that emerged from colonial domination. UN conferences have defined the concept of ‘reproductive health’ as one that supports women's reproductive self‐determination, but restrictive abortion laws and practices epitomize the unjust constraints to which many women remain subject, resulting in their unsafe motherhood. Pregnant women can be legally compelled to give the resources of their bodies to the support of others, while fathers are not legally compellable to provide, for instance, bone‐marrow or blood donations for their children's survival. Women's unjust legal, political, economic and social powerlessness explains much unsafe motherhood and maternal mortality and morbidity. (shrink)

Can the institutional systems that prepare Black nurse researchers question the ways their systemic pathways have impacted health equity knowledge development in nursing? We invite our readers to keep this question in mind and engage with our conversation as Black nurse researchers, scholars, educators, and clinicians. The purpose of our conversation, and this article, is to explore the transactional impact of knowledge development pathways and Black faculty retention pathways on the state of health equity knowledge in nursing today. Over a (...) series of conversations, we discuss the research exploitation of communities of color, deficit research funding, knowledge capitalization, the marginalization of diversity as a continuous process, a lack of sociocultural authority, and our thoughts on solutions. We conclude by using the wisdom of a generation to answer our initial question. (shrink)

Background To investigate attitudes of staff, residents and family members in long-term care towards sex and intimacy among older adults, specifically the extent to which they conceptualise sex and intimacy as a need, a right, a privilege or as a component of overall well-being. Methods The present study was a part of a two-arm mixed-methods cross-sectional study using a concurrent triangulation design. A validated survey tool was developed; 433 staff surveys were collected from 35 facilities across the country. Interviews were (...) conducted with 75 staff, residents and family members. Results It was common for staff, residents and family members to talk about intimacy and sexuality in terms of rights and needs. As well as using the language of needs and rights, it was common for participants to use terms related to well-being, such as fun, happiness or being miserable. One participant in particular described receiving intimate touch as a ‘kind of care’—a particularly useful way of framing the conversation. Conclusion While staff, residents and family frequently used the familiar language of needs and rights to discuss access to intimate touch, they also used the language of well-being and care. Reframing the conversation in this way serves a useful purpose: it shifts the focus from simply meeting minimum obligations to a salutogenic approach—one that focuses on caring for the whole person in order to improve overall well-being and quality of life. No data are available. (shrink)

This book is an extensive survey and critical examination of the literature on the use of expert opinion in scientific inquiry and policy making. The elicitation, representation, and use of expert opinion is increasingly important for two reasons: advancing technology leads to more and more complex decision problems, and technologists are turning in greater numbers to "expert systems" and other similar artifacts of artificial intelligence. Cooke here considers how expert opinion is being used today, how an expert's uncertainty is or (...) should be represented, how people do or should reason with uncertainty, how the quality and usefulness of expert opinion can be assessed, and how the views of several experts might be combined. He argues for the importance of developing practical models with a transparent mathematic foundation for the use of expert opinion in science, and presents three tested models, termed "classical," "Bayesian," and "psychological scaling." Detailed case studies illustrate how they can be applied to a diversity of real problems in engineering and planning. (shrink)

Drawing from moral foundations theory, we show that differences in sensitivity to distinct moral norms help explain differences in the perceived fairness of punishing employees for off-duty deviance. We used an initial study to validate realistic examples of non-criminal behavior that were perceived as violating a specific moral foundation. Participants in the main study evaluated scenarios in which co-workers were fired for those behaviors, which took place outside of work but were revealed via social media. The extent to which participants (...) valued the norm violated by the co-worker positively predicted perceived fairness of the firing, and negatively predicted expressed intent to take retributive action against the responsible manager. This effect was moderated by the presence of a pre-existing organizational policy regarding off-duty conduct, which uniformly decreased negative reactions to the firing. Because social media now makes the revelation of an employee’s off-duty behavior to a broad audience increasingly likely, our results suggest the importance of developing an approach for responding to employee off-duty deviance while highlighting the relevance of moral pluralism to the study of third-party reactions. (shrink)

The concept of reproductive health promises to play a crucial role in improving health care provision and legal protection for women around the world. This is an authoritative and much-needed introduction to and defence of the concept of reproductive health, which though internationally endorsed, is still contested. The authors are leading authorities on reproductive medicine, women's health, human rights, medical law, and bioethics. They integrate their disciplines to provide an accessible but comprehensive picture. They analyse 15 cases from different countries (...) and cultures, and explore options for resolution. The aim is to equip readers to fashion solutions in their own health care circumstances, compatibly with ethical, legal and human rights principles. (shrink)

Integrated developmental and elemental information in teeth provide a unique framework for documenting breastfeeding histories, physiological disruptions, and neurotoxicant exposure in humans and our primate relatives, including ancient hominins. Here we detail our method for detecting the consumption of mothers’ milk and exploring health history through the use of laser ablation‐inductively coupled plasma‐mass spectrometry (LA‐ICP‐MS) mapping of sectioned nonhuman primate teeth. Calcium‐normalized barium and lead concentrations in tooth enamel and dentine may reflect milk and formula consumption with minimal modification during (...) subsequent tooth mineralization, particularly in dentine. However, skeletal resorption during severe illness, and bioavailable metals in nonmilk foods, can complicate interpretations of nursing behavior. We show that explorations of the patterning of multiple elements may aid in the distinction of these important etiologies. Targeted studies of skeletal chemistry, gastrointestinal maturation, and the dietary bioavailability of metals are needed to optimize these unique records of human health and behavior. (shrink)

This paper presents an overview of the dimensions of unsafe motherhood, contrasting data from economically developed countries with some from developing countries. It addresses many common factors that shape unsafe motherhood, identifying medical, health system and societal causes, including women's powerlessness over their reproductive lives in particular as a feature of their dependent status in general. Drawing on perceptions of Jonathan Mann, it focuses on public health dimensions of maternity risks, and equates the role of bioethics in conscientious medical care (...) to that of human rights in public health care. The microethics of medical care translate into the macroethics of public health, but the transition compels some compromise of personal autonomy, a key feature of Western bioethics, in favour of societal analysis. Religiously‐based morality is seen to have shaped laws that contribute to unsafe motherhood. Now reformed in former colonizing countries of Europe, many such laws remain in effect in countries that emerged from colonial domination. UN conferences have defined the concept of ‘reproductive health’ as one that supports women's reproductive self‐determination, but restrictive abortion laws and practices epitomize the unjust constraints to which many women remain subject, resulting in their unsafe motherhood. Pregnant women can be legally compelled to give the resources of their bodies to the support of others, while fathers are not legally compellable to provide, for instance, bone‐marrow or blood donations for their children's survival. Women's unjust legal, political, economic and social powerlessness explains much unsafe motherhood and maternal mortality and morbidity. (shrink)