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)

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)

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)

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

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)

When infertility clinics offer money-back guarantees, they prefer to give them more delicate names such as “shared risk,” “warranty,” or “outcome” programs. We should not allow such daintiness to distract us from the bottom line of these programs which are all about the bottom line.John Robertson and Theodore Schneyer defend such programs as special forms of insurance, what they call “risk-of-failure insurance.” They argue, in “Professional Self-Regulation and Shared-Risk Programs for In Vitro Fertilization,” that the criticisms of in vitro fertilization (...) shared-risk programs by the American Medical Association and others are off the mark. It would be sufficient, Robertson and Schneyer contend, to develop guidelines for informed consent or protocols that discourage risky clinical procedures. They acknowledge that shared risk plans “present problems if not offered with full disclosure and attention to patient interests,” but they insist that “there is no reason why they cannot be implemented in an ethically sound way.”. (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)

Deciding whether genetic differences among individuals are morally relevant to health insurance requires us to ask, What kind of good is health care? and, What principles should govern its distribution? There are good reasons to doubt that “actuarial fairness” is an adequate description of genuine fairness in health insurance.

This volume assesses the ethical, quantitative, and qualitative questions posed by the current financing of biomedical research.

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)

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)

Book reviewed in this article: Ethical Dilemmas and Social Science Research. By Paul Davidson Reynolds.

Good Sport argues that the values and meanings embedded within sport provide the guidance we need to make difficult decisions about fairness and performance-enhancing technologies. By examining how sport's history, rules and practices identify and celebrate natural talent and dedication, the book illuminates not just what we champion in the athletic arena but more broadly what we value in human achievement.

Bauer, Taub, and Parsi's review of an international sample of standards on informed consent, confidentiality, commercialization, and quality of research in tissue banking reveals that no clear national or international consensus exists for these issues. The authors' response to the lack of uniformity in the meaning, scope, and ethical significance of the policies they examined is to call for the creation of uniform ethical guidelines. This raises questions about whether harmonization should consist of voluntary international standards or international regulations that (...) include an official oversight mechanism and sanctions for noncompliance, and about who should participate in the harmonization process. Moreover, the normative assumptions and political dynamics that shape global policymaking need to be addressed. This commentary explores the policy implications and normative questions raised by the idea of international ethical guidelines for the use of biotechnologies and biotechnological resources such as stored samples of human tissue. (shrink)

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)