Background: The factors influencing parents’ willingness to enroll their children in biobanks are poorly understood. This study sought to assess parents’ willingness to enroll their children, and their perceived benefits, concerns, and information needs under different consent and data-sharing scenarios, and to identify factors associated with willingness. Methods: This large, experimental survey of patients at the 11 eMERGE Network sites used a disproportionate stratified sampling scheme to enrich the sample with historically underrepresented groups. Participants were randomized to receive one of (...) three consent and data-sharing scenarios. Results: In total, 90,000 surveys were mailed and 13,000 individuals responded (15.8% response rate). 5737 respondents were parents of minor children. Overall, 55% (95% confidence interval 50–59%) of parents were willing to enroll their youngest minor child in a hypothetical biobank; willingness did not differ between consent and data-sharing scenarios. Lower educational attainment, higher religiosity, lower trust, worries about privacy, and attitudes about benefits, concerns, and information needs were independently associated with less willingness to allow their child to participate. Of parents who were willing to participate themselves, 25% were not willing to allow their child to participate. Being willing to participate but not willing to allow one’s child to participate was independently associated with multiple factors, including race, lower educational attainment, lower annual household income, public health care insurance, and higher religiosity. Conclusions: Fifty-five percent of parents were willing to allow their youngest minor child to participate in a hypothetical biobank. Building trust, protecting privacy, and addressing attitudes may increase enrollment and diversity in pediatric biobanks. (shrink)

In writing the following notes on some passages in Aeschylus' Persae I have consulted mainly the editions of Schiitz, Blomfield, Hermann, Paley, Vitelli–Wecklein, Sidgwick, Prickard, Wilamowitz, Mazon, and Italie , and the Index of Italie. The text quoted is that of Murray.

Thomas Murray's graceful and humane book illuminates one of the most morally complex areas of everyday life: the relationship between parents and children. What do children mean to their parents, and how far do parental obligations go? What, from the beginning of life to its end, is the worth of a child? Ethicist Murray leaves the rarefied air of abstract moral philosophy in order to reflect on the moral perplexities of ordinary life and ordinary people. Observing that abstract (...) moral terms such as altruism and selfishness can be buried in the everyday doings of families, he maintains that ethical theory needs a richer description than it now has of the moral life of parents and children. How far should adults go in their quest for children? What options are available to women who do not want to bear a child now? Should couples be allowed to reject a child because of genetic disability or "wrong" gender? How can we weigh the competing claims of the genetic and the rearing parents to a particular child? _The Worth of a Child_ couples impressive learning with a conversational style. Only by getting down to cases, Murray insists, can we reach moral conclusions that are unsentimental, farsighted, and just. In an era of intense public and private acrimony about the place and meaning of "family values," his practical wisdom about extraordinary difficult moral issues offers compelling reading for both experienced and prospective parents, as well as for ethicists, social and behavioral scientists, and legal theorists. (shrink)

In a recent case in Great Britain, a couple described as “white” underwent in vitro fertilisation and gave birth to twins described as “black”. In the sense of a fair adjudication of this particular case, serving justice requires a thick description and a sensitive understanding of the relevant facts. We have only a few facts, but they may be sufficient to serve justice in this first sense.We are told that the couple wants to keep the twins. We are told further (...) that British law holds that the woman giving birth is to be regarded as the legal mother . Finally, we are told that DNA testing has established that the gestational mother is also the genetic mother of these infants. Her husband, whose sperm were supposed to be used to fertilise his wife’s eggs, is not the genetic father. A black couple was also undergoing IVF at the same clinic; it may be that this man’s sperm were used by mistake.We know enough to reach a defensible decision in the case. The couple caring for these children has contributed a half share of the children’s genes, and the woman was also the gestational mother, so they have at least an equal argument from biology. Their intention was to have these children and they also wish to raise them; they went through the rigours of IVF, and are willing to take on the responsibility of parenthood. Since the children were born, furthermore, they have shouldered the hard work of parenthood. We don’t know their particular circumstances; perhaps they’ve had help from family or others; but in all likelihood they’ve had an ample share of sleep deprived nights, soiled nappies, and exhausted days. …. (shrink)

The Human Genome Project is expected to increase dramatically our ability to predict the likelihood of genetic disease in an individual. It is important to reject the myth of genetic determinism—i.e., the simple-minded belief that such complex outcomes as heart disease, cancer, or autoimmune diseases are caused exclusively by particular genes. But it is equally important to acknowledge that genes may play a role in making a person more or less susceptible to such diseases. The ever-increasing prospect of genetic prediction, (...) spurred by the Human Genome Project, has implications for social practices such as insurance, in which predicting the risk of disease or death plays a crucial role. Concerned that improved genetic prediction might have unfortunate social consequences unless the impact of such predictions were anticipated, the U.S. Human Genome Project's Working Group on Ethical, Legal, and Social Issues established a Task Force on Genetic Information and Insurance in May 1991. -/- The Task Force met seven times over its two-year life. By the end of the first year, it had reached several tentative conclusions. Most importantly, we became convinced that the problem posed by increased genetic prediction in insurance was a genuine and important one. When we began, the danger seemed plausible but far from certain. The information we gathered in the first year persuaded us that genetic prediction of disease was in one sense already with us and, in another sense, likely to grow massively in the foreseeable future. (shrink)

DHHS's rule on the care of imperiled newborns has a symbolic significance for the groups that struggled for compromise, but it will have a minimal impact on medical and moral decision making.

Thomas Murray's graceful and humane book illuminates one of the most morally complex areas of everyday life: the relationship between parents and children. What do children mean to their parents, and how far do parental obligations go? What, from the beginning of life to its end, is the worth of a child? Ethicist Murray leaves the rarefied air of abstract moral philosophy in order to reflect on the moral perplexities of ordinary life and ordinary people. Observing that abstract (...) moral terms such as altruism and selfishness can be buried in the everyday doings of families, he maintains that ethical theory needs a richer description than it now has of the moral life of parents and children. How far should adults go in their quest for children? What options are available to women who do not want to bear a child now? Should couples be allowed to reject a child because of genetic disability or "wrong" gender? How can we weigh the competing claims of the genetic and the rearing parents to a particular child? _The Worth of a Child_ couples impressive learning with a conversational style. Only by getting down to cases, Murray insists, can we reach moral conclusions that are unsentimental, farsighted, and just. In an era of intense public and private acrimony about the place and meaning of "family values," his practical wisdom about extraordinary difficult moral issues offers compelling reading for both experienced and prospective parents, as well as for ethicists, social and behavioral scientists, and legal theorists. (shrink)

Digital artifacts from iPads to databases pervade our lives, and the design decisions that shape them affect how we think, act, communicate, and understand the world. But the pace of change has been so rapid that technical innovation is outstripping design. Interactors are often mystified and frustrated by their enticing but confusing new devices; meanwhile, product design teams struggle to articulate shared and enduring design goals. With Inventing the Medium, Janet Murray provides a unified vocabulary and a common methodology (...) for the design of digital objects and environments. It will be an essential guide for both students and practitioners in this evolving field. Murray explains that innovative interaction designers should think of all objects made with bits--whether games or Web pages, robots or the latest killer apps--as belonging to a single new medium: the digital medium. Designers can speed the process of useful and lasting innovation by focusing on the collective cultural task of inventing this new medium. Exploring strategies for maximizing the expressive power of digital artifacts, Murray identifies and examines four representational affordances of digital environments that provide the core palette for designers across applications: computational procedures, user participation, navigable space, and encyclopedic capacity. Each chapter includes a set of Design Explorations--creative exercises for students and thought experiments for practitioners--that allow readers to apply the ideas in the chapter to particular design problems. Inventing the Medium also provides more than 200 illustrations of specific design strategies drawn from multiple genres and platforms and a glossary of design concepts. (shrink)

My thirteen years as president of Hastings have been rich in solidarity. Now for some solitude, and a new adventure: Cynthia and I will relocate to Cape Cod, a place rich in family memories. I'll explore the roads and trails on my bicycle and, if I can become a competent kayaker, the waterways. Some of my best thinking has come while riding. I'll have a study there, a place to think and write. I will continue to support the initiatives we've (...) begun at the Center, especially bioethics in the public interest and the flourishing of bioethics internationally. The challenge is to balance solitude and solidarity. Next year I'll be the Terry Visiting Scholar at Yale, a wonderful chance to discuss ideas with students and faculty there. I'm considering other opportunities to share what I've learned and to learn from others. To everyone, thanks for your patience, wisdom, and support. May your next adventure be surprising and fulfilling. (shrink)

Cloning was the issue that put the National Bioethics Advisory Commission on the map, but the first clue that NBAC would address cloning was a terse fax from the White House to each of us who served on the Commission. The fax noted that with the birth of the sheep named Dolly, mammalian cloning was now a reality, and it tasked NBAC with providing advice on the ethics of human cloning and how the nation should respond to it. We were (...) given ninety days to report our findings. That's a very tight deadline for a report written by a committee, but we met it, and along the way, I learned important lessons. My goal in this essay is to share what I learned at the ramparts of what I will call, with apologies to George Lucas, the Cloning Wars and through NBAC's work on five additional reports. (shrink)

This volume presents articles which focus on the ethical evaluation of performance-enhancing technologies in sport. The collection considers whether drug doping should be banned; the rationale of not banning ethically contested innovations such as hypoxic chambers; and the implications of the prospects of human genetic engineering for the notion of sport as a development of 'natural' talent towards human excellence. The essays demonstrate the significance of the principles of preventing harm, ensuring fairness and preserving meaning to appraise whether a particular (...) performance enhancer is acceptable in the context of sport. Selected essays on various forms of human enhancement outside of sport that highlight other principles and concepts are included for comparative purpose. Sport enhancement provides a useful starting point to work through the ethics of enhancement in other human practices and endeavors, and sport enhancement ethics should track broader bioethical debates on human enhancement. As a whole, the volume points to the need to consider the values and meanings that people seek in a given sphere of human activity and their associated principles to arrive at a morally grounded and reasonable approach to enhancement ethics. (shrink)

Most philosophers of science nowadays hold a network or postulational view of the meaning of theoretical words. However, there are many nuances to this view, and after explicitly separating them, we show what we take to be wrong with each one. While we reject the postulational view we do not defend its traditional alternatives either; rather we show the pointlessness of insisting on a single source for the meaning of theoretical words. We also point out the shortcomings of Carnap's newest (...) meaning criterion which depends upon a network view. But, again, we suggest not only that this new rendition of the criterion is faulty but also that there is something misguided about any search at all for such a criterion. (shrink)

Genetic testing can be used to determine if unexplained fractures in children could have resulted from a predisposition to bone fractures, e.g., osteogenesis imperfecta. However, uncertainty is introduced if a variant of unknown significance is identified. Proper interpretation of VUS in these situations is critical because of its influence on clinical care and in court rulings. This study sought to understand how VUS are interpreted and used by practitioners when there is a differential diagnosis including both osteogenesis imperfecta and non-accidental (...) injury.A 15-question survey was emailed to physicians who requested analysis of two genes, COL1A1 and COL1A2, from the University of Washington from 2005-2013 for patient cases involving suspicion of child abuse.Among the 89 participants, responses differed about when genetic testing should be ordered for osteogenesis imperfecta, who should be consulted about utilization of VUS test results, follow-up procedures, and who should receive the VUS results.There are no clear guidelines for how to interpret and follow up on VUS. In the legal setting, misinterpreted VUS could lead to unintended consequences and deleterious ramifications for family members. The need for better practice guidelines to help promote more equitable handling of these sensitive legal cases is clear. (shrink)

ObjectiveTo prospectively study the cingulate cortex for the localization and role of the grasping action in humans during electrical stimulation of depth electrodes.MethodsAll the patients with intractable focal epilepsy and a depth electrode stereotactically placed in the cingulate cortex, as part of their pre-surgical epilepsy evaluation from 2015 to 2017, were included. Cortical stimulation was performed and examined for grasping actions. Post-implantation volumetric T1 MRIs were co-registered to determine the exact electrode position.ResultsFive patients exhibited contralateral grasping actions during electrical stimulation. (...) All patients had electrodes implanted in the ventral bank of the right cingulate sulcus adjacent to the vertical anterior commissure line. Stimulation of other electrodes in adjacent regions did not elicit grasping.ConclusionGrasping action elicited from a localized region in the mid-cingulate cortex directly supports the concept of the cingulate cortex being crucially involved in the grasping network. This opens an opportunity to explore this region with deep brain stimulation as a motor neuromodulation target for treatment in specific movement disorders or neurorehabilitation. (shrink)

A range of views on the morality of synthetic biology and its place in public policy and political discourse.