In the 1960s, newborn screening programs tested for a single very rare but serious disorder. In recent years, thanks to the development of new screening technology, they have expanded into panels of tests; a federally sponsored expert group has recommended that states test for twenty-nine core disorders and twenty-five secondary disorders. By the standards used to decide whether to introduce new preventive health services into clinical use, the decision-making in newborn screening policy has been lax.

As the range of conditions for which we can test prenatally expands, society and the medical profession need to develop guidelines about which tests ought to be offered and which ought not to be. Notions of fetal privacy and confidentiality can help to define limits to what parents may reasonably learn about their future child.

Preimplantation genetic diagnosis is a new method of prenatal diagnosis that is developing from a union of in vitro fertilization technology and molecular biology. Briefly stated, PGD involves the creation of several embryos in vitro from the eggs and sperm of an interested couple. The embryos are permitted to develop to a 6-to-10-cell stage, at which point one of the embryonic cells is removed from each embryo and the cellular DNA is analyzed for chromosomal abnormalities or genetic mutations. An embryo (...) or several embryos found to be free of genetic abnormalities are subsequently transferred to the woman's uterus for gestation. Embryos found to carry a genetic abnormality are discarded or frozen. Extra normal embryos may be frozen for future transfer or donation to another couple. (shrink)

Preimplantation genetic diagnosis is a new method of prenatal diagnosis that is developing from a union of in vitro fertilization technology and molecular biology. Briefly stated, PGD involves the creation of several embryos in vitro from the eggs and sperm of an interested couple. The embryos are permitted to develop to a 6-to-10-cell stage, at which point one of the embryonic cells is removed from each embryo and the cellular DNA is analyzed for chromosomal abnormalities or genetic mutations. An embryo (...) or several embryos found to be free of genetic abnormalities are subsequently transferred to the woman's uterus for gestation. Embryos found to carry a genetic abnormality are discarded or frozen. Extra normal embryos may be frozen for future transfer or donation to another couple. (shrink)

The Common Rule governs research on human subjects and attempts to balance respect for individual decision-making with efficiency when research risks are low. The regulations allow research to be conducted without consent if the data or biospecimens collected in a study are deidentified, and consent can be waived for identifiable data and biospecimens if the risks of the research are minimal and consent is deemed impracticable. These approaches have been widely used for research using clinical databases and residual clinical and (...) research biospecimens, and they have proven remarkably successful over the past twenty-five years, if success is measured by a lack of adverse events.But the landscape is changing. (shrink)

“Wrongful birth” is a controversial malpractice action, which has arisen in the past two decades, secondary to an expanding knowledge of human genetics and the constitutionally protected access to abortion. Under the wrongful birth claim, parents of a child with a congenital illness or abnormality may bring suit against a physician who allegedly failed to provide appropriate prenatal counseling or information. Typically, the parents claim that they were inadequately warned of a potential problem in their child, and that this paucity (...) of timely information prevented them from avoiding the pregnancy or from obtaining an abortion. While these cases have arisen in a variety of clinical circumstances, a characteristic example is the obstetrician who fails to offer amniocentesis to a woman of advanced maternal age who subsequently gives birth to a child with Down syndrome. Since the parents were prevented from learning of the abnormality and therefore exercising the option to terminate the pregnancy, they may claim damages for themselves for the wrongful birth of the infant. (shrink)

“Wrongful birth” is a controversial malpractice action, which has arisen in the past two decades, secondary to an expanding knowledge of human genetics and the constitutionally protected access to abortion. Under the wrongful birth claim, parents of a child with a congenital illness or abnormality may bring suit against a physician who allegedly failed to provide appropriate prenatal counseling or information. Typically, the parents claim that they were inadequately warned of a potential problem in their child, and that this paucity (...) of timely information prevented them from avoiding the pregnancy or from obtaining an abortion. While these cases have arisen in a variety of clinical circumstances, a characteristic example is the obstetrician who fails to offer amniocentesis to a woman of advanced maternal age who subsequently gives birth to a child with Down syndrome. Since the parents were prevented from learning of the abnormality and therefore exercising the option to terminate the pregnancy, they may claim damages for themselves for the wrongful birth of the infant. (shrink)

Imagine a genetic counselor working with a young couple pregnant with their first child. The explosion of genetic knowledge and technology in recent years is complicating this professional relationship as a host of new choices brings a few clients with atypical needs. This couple is deaf. They seek not to avoid a child with their disability but rather to assure that the child too will be deaf—a child to share their culture and perspectives on the world. If prenatal diagnosis indicates (...) that the prospective child would be hearing, they intend to terminate the pregnancy and try again. So, how should the counselor respond to this request for services? Does a traditional deference to parental autonomy in reproductive matters require that we respect such decisions by informed couples? More broadly, what are the concepts by which society will guide policy in this new and sensitive domain? (shrink)

ABSTRACT In this article, we first document the virtually complete absence of infectious disease examples and concerns at the time bioethics emerged as a field. We then argue that this oversight was not benign by considering two central issues in the field, informed consent and distributive justice, and showing how they might have been framed differently had infectiousness been at the forefront of concern. The solution to this omission might be to apply standard approaches in liberal bioethics, such as autonomy (...) and the harm principle, to infectious examples. We argue that this is insufficient, however. Taking infectious disease into account requires understanding the patient as victim and as vector. Infectiousness reminds us that as autonomous agents we are both embodied and vulnerable in our relationships with others. We conclude by applying this reunderstanding of agency to the examples of informed consent and distributive justice in health care. (shrink)

ABSTRACT In this article, we first document the virtually complete absence of infectious disease examples and concerns at the time bioethics emerged as a field. We then argue that this oversight was not benign by considering two central issues in the field, informed consent and distributive justice, and showing how they might have been framed differently had infectiousness been at the forefront of concern. The solution to this omission might be to apply standard approaches in liberal bioethics, such as autonomy (...) and the harm principle, to infectious examples. We argue that this is insufficient, however. Taking infectious disease into account requires understanding the patient as victim and as vector. Infectiousness reminds us that as autonomous agents we are both embodied and vulnerable in our relationships with others. We conclude by applying this reunderstanding of agency to the examples of informed consent and distributive justice in health care. (shrink)

This paper examines the characteristics of infectious diseases that raise special medical and social ethical issues, and explores ways of integrating both current bioethical and classical public health ethics concerns. Many of the ethical issues raised by infectious diseases are related to these diseases’ powerful ability to engender fear in individuals and panic in populations. We address the association of some infectious diseases with high morbidity and mortality rates, the sense that infectious diseases are caused by invasion or attack on (...) humans by foreign micro‐organisms, the acute onset and rapid course of many infectious diseases, and, in particular, the communicability of infectious diseases. The individual fear and community panic associated with infectious diseases often leads to rapid, emotionally driven decision making about public health policies needed to protect the community that may be in conflict with current bioethical principles regarding the care of individual patients. The discussion includes recent examples where dialogue between public health practitioners and medical‐ethicists has helped resolve ethical issues that require us to consider the infected patient as both a victim with individual needs and rights and as a potential vector of disease that is of concern to the community. (shrink)

As sharing and secondary research use of biospecimens increases, IRBs and researchers face the challenge of protecting and respecting donors without comprehensive regulations addressing the human subject protection issues posed by biobanking. Variation in IRB biobanking policies about these issues has not been well documented.

This paper examines the characteristics of infectious diseases that raise special medical and social ethical issues, and explores ways of integrating both current bioethical and classical public health ethics concerns. Many of the ethical issues raised by infectious diseases are related to these diseases' powerful ability to engender fear in individuals and panic in populations. We address the association of some infectious diseases with high morbidity and mortality rates, the sense that infectious diseases are caused by invasion or attack on (...) humans by foreign micro-organisms, the acute onset and rapid course of many infectious diseases, and, in particular, the communicability of infectious diseases. The individual fear and community panic associated with infectious diseases often leads to rapid, emotionally driven decision making about public health policies needed to protect the community that may be in conflict with current bioethical principles regarding the care of individual patients. The discussion includes recent examples where dialogue between public health practitioners and medical-ethicists has helped resolve ethical issues that require us to consider the infected patient as both a victim with individual needs and rights and as a potential vector of disease that is of concern to the community. (shrink)

It is unclear whether the regulatory distinction between non-identifiable and identifiable information—information used to determine informed consent practices for the use of clinically derived samples for genetic research—is meaningful to patients. The objective of this study was to examine patients' attitudes and preferences regarding use of anonymous and identifiable clinical samples for genetic research. Telephone interviews were conducted with 1,193 patients recruited from general medicine, thoracic surgery, or medical oncology clinics at five United States academic medical centers. Wanting to know (...) about research being done was important to 72% of patients when samples would be anonymous and to 81% of patients when samples would be identifiable. Only 17% wanted to know about the identifiable scenario but not the anonymous scenario. Curiosity-based reasons were the most common among patients who wanted to know about anonymous samples. Of patients wanting to know about either scenario, approximately 57% would require researchers to seek permission, whereas 43% would be satisfied with notification only. Patients were more likely to support permission in the anonymous scenario if they had more education, were Black, less religious, in better health, more private, and less trusting of researchers. The sample, although not representative of the general population, does represent patients at academic medical centers whose clinical samples may be used for genetic research. Few patients expressed preferences consistent with the regulatory distinction between non-identifiable and identifiable information. Data from this study should cause policy-makers to question whether this distinction is useful in relation to research with previously collected clinically derived samples. (shrink)

The overlap and differences between the parallel regulatory systems for research create ample room for confusion and missteps, as discussed by Barbara Bierer and Mark Barnes in their report in this supplement. In practice, beyond the inherent differences in the two systems of regulations themselves, there are many issues that further complicate the application of these regulations. These include the variation in size of the institutions receiving PHS funding, the increased prevalence of multisite research, the allocation of research conduct and (...) oversight to external organizations, and the variability in assignment of human subject protection roles between the IRB and the institution. (shrink)

This third paper locates the synthetic neurorobotics research reviewed in the second paper in terms of themes introduced in the first paper. It begins with biological non-reductionism as understood by Searle. It emphasizes the role of synthetic neurorobotics studies in accessing the dynamic structure essential to consciousness with a focus on system criticality and self, develops a distinction between simulated and formal consciousness based on this emphasis, reviews Tani and colleagues' work in light of this distinction, and ends by forecasting (...) the increasing importance of synthetic neurorobotics studies for cognitive science and philosophy of mind going forward, finally in regards to most- and myth-consciousness. (shrink)

Direct neurological and especially imaging-driven investigations into the structures essential to naturally occurring cognitive systems in their development and operation have motivated broadening interest in the potential for artificial consciousness modeled on these systems. This first paper in a series of three begins with a brief review of Boltuc’s (2009) “brain-based” thesis on the prospect of artificial consciousness, focusing on his formulation of h-consciousness. We then explore some of the implications of brain research on the structure of consciousness, finding limitations (...) in biological approaches to the study of consciousness. Looking past these limitations, we introduce research in artificial consciousness designed to test for the emergence of consciousness, a phenomenon beyond the purview of the study of existing biological systems. (shrink)

The present paper shows how one might model Everettian quantum mechanics using hyperfinitely many worlds. A hyperfinite model allows one to consider idealized measurements of observables with continuous-valued spectra where different outcomes are associated with possibly infinitesimal probabilities. One can also prove hyperfinite formulations of Everett’s limiting relative-frequency and randomness properties, theorems he considered central to his formulation of quantum mechanics. Finally, this model provides an intuitive framework in which to consider no-collapse formulations of quantum mechanics more generally.

The concepts of sustainable agriculture, organic agriculture, regenerative agriculture, and alternative agriculture are receiving increasing attention in the academic and popular literature on present trends and future directions of agriculture. Whatever the reasons for this interest, there nevertheless remain differences of opinion concerning what counts as a sustainable agriculture. One of the reasons for these differences is that the moral underpinnings of a policy of sustainability are not clear. By understanding the moral obligatoriness of sustainability, we can come to understand (...) precisely what must be sustained, and by implication, how. This article discusses the arguments that can be advanced for sustaining anything and initially concludes that our obligations to future generations entail sustaining more than just sufficient food production or an adequate resource base. Indeed, a tradition of care and community must underlie whatever agricultural and resource strategies we are to develop under the rubric of sustainability. A consideration of the larger social and environmental system in which agriculture operates and the constraints this system places on agriculture forces us to recognize that sustainability has to do with larger institutional issues, including our ability to incorporate our common morality democratically into our institutions, practices, and technologies. (shrink)

Wattles offers a comprehensive survey of the history of the golden rule, "Do unto others as you want others to do unto you". He traces the rule's history in contexts as diverse as the writings of Confucius and the Greek philosophers, the Bible, modern theology and philosophy, and the American "self-help" context. He concludes by offering his own synthesis of these varied understandings.

A model of the neuropsychology of anxiety is proposed. The model is based in the first instance upon an analysis of the behavioural effects of the antianxiety drugs in animals. From such psychopharmacologi-cal experiments the concept of a “behavioural inhibition system” has been developed. This system responds to novel stimuli or to those associated with punishment or nonreward by inhibiting ongoing behaviour and increasing arousal and attention to the environment. It is activity in the BIS that constitutes anxiety and that (...) is reduced by antianxiety drugs. The effects of the antianxiety drugs in the brain also suggest hypotheses concerning the neural substrate of anxiety. Although the benzodiazepines and barbiturates facilitate the effects of γ-aminobutyrate, this is insufficient to explain their highly specific behavioural effects. Because of similarities between the behavioural effects of certain lesions and those of the antianxiety drugs, it is proposed that these drugs reduce anxiety by impairing the functioning of a widespread neural system including the septo-hippocampal system, the Papez circuit, the prefrontal cortex, and ascending monoaminergic and cholinergic pathways which innervate these forebrain structures. Analysis of the functions of this system suggests that it acts as a comparator: it compares predicted to actual sensory events and activates the outputs of the BIS when there is a mismatch or when the predicted event is aversive. Suggestions are made as to the functions of particular pathways within this overall brain system. The resulting theory is applied to the symptoms and treatment of anxiety in man, its relations to depression, and the personality of individuals who are susceptible to anxiety or depression. (shrink)

In order to understand ongoing activity, observers segment it into meaningful temporal parts. Segmentation can be based on bottom‐up processing of distinctive sensory characteristics, such as movement features. Segmentation may also be affected by top‐down effects of knowledge structures, including information about actors' intentions. Three experiments investigated the role of movement features and intentions in perceptual event segmentation, using simple animations. In all conditions, movement features significantly predicted where participants segmented. This relationship was stronger when participants identified larger units than (...) when they identified smaller units, and stronger when the animations were generated randomly than when they were generated by goal‐directed human activity. This pattern suggests that bottom‐up processing played an important role in segmentation of these stimuli, but that this was modulated by top‐down influence of knowledge structures. To describe accurately how observers perceive ongoing activity, one must account for the effects of distinctive sensory characteristics, the effects of knowledge structures, and their interactions. (shrink)

A simple tool is provided to assist researchers in assessing contributions to a scientific publication, for ease in evaluating which contributors qualify for authorship, and in what order the authors should be listed. The tool identifies four phases of activity leading to a publication—Conception and Design, Data Acquisition, Analysis and Interpretation, and Manuscript Preparation. By comparing a project participant’s contribution in a given phase to several specified thresholds, a score of up to five points can be assigned; the contributor’s scores (...) in all four phases are summed to yield a total “contribution score”, which is compared to a threshold to determine which contributors merit authorship. This tool may be useful in a variety of contexts in which a systematic approach to authorial credit is desired. (shrink)

This Handbook fills a large gap in current scholarly literature on animal abuse studies. It moves considerably beyond the debate that has traditionally dominated the discourse of animal abuse – the link between one-on-one interpersonal violence and animal abuse – and towards those institutionalised forms of animal abuse which are routine, everyday, socially acceptable and invisibilised. Chapters from expert contributors raise issues such as: the use of animals as edibles; vivisection; animal sexual assault; animals used in sport and hunting; animal (...) trafficking; the use of animals by youth gangs, by other groups and in war; species extinction; and the passivity of national and international organisations in combating animal abuse. The Handbook is a unique text: it is essential reading for students, researchers, academics, activists and policy makers involved in understanding and preventing animal abuse. (shrink)

I begin by defending Heinrich Gustav Hotho’s foundational edition of the Lectures on Aesthetics (LA) contra Gethmann-Siebert and others who argue for a non-systematic view of Hegel’s aesthetics generally and music specifically. I defend Hegel against the common conceit that his comprehension of music was somehow deficient and introduce the Hegelian idea of absolute agency as performative in art and music. Reference to Kant’s transcendental aesthetics then allows us to grasp how, in Hegel, meaningful tones arise from the vibratory oscillation (...) between selfhood’s presiding unity and its temporal self-positing. I then trace back further elements of musical architecture, such as rhythm, harmony and melody to the temporal oscillation arising from within selfhood. The fundamental ambiguity within temporal oscillation is the source of meaningfulness in music, the feeling that its experience is meaningful without telling us exactly what that meaning is. Meaningfulness forms the absolute Ur-Ton of beautiful music, which arises as determinate tones within selfhood and resonates into the soul of the listener. The temporal vanishing of musical tones within a compositional framework is a pre-linguistic expression of meaning, performative of the ambiguous oscillation between the human and the divine. (shrink)