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 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)

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)

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.

This paper examines the role that linguistic and cognitive prominence play in the resolution of anaphor–antecedent relationships. In two experiments, we found that pronouns are immediately sensitive to the cognitive prominence of potential antecedents when other antecedent selection cues are uninformative. In experiment 1, results suggest that despite their theoretical dissimilarities, topic and contrastive focus both serve to enhance cognitive prominence. Results from experiment 2 suggest that the contrastive prosody appropriate for focus constructions may also play an important role in (...) enhancing cognitive prominence. Thus different types of linguistic prominence (topic, contrastive focus) appear to have the common effect of increasing the cognitive prominence of the discourse referent. For pronouns with two possible antecedents, the cognitive prominence of an antecedent aids in anaphor resolution, immediately biasing selection towards the more prominent (and ultimately preferred) antecedent. (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.

The standard approach to the ethics of reproductive technologies starts and ends with the parents’ procreative liberty. There's much more to think about. We should start with the relationship between parents and children.

Cheating evolves constantly. Dozens of athletes were barred from the Winter Olympics for taking banned substances. Gene doping is on the horizon. Questions have arisen about which athletes count as “female.” What does it take to keep sports fair? And what does fairness require?

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

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

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.

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

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)

When deciding what disorders to screen newborns for, we should be guided by evidence of real effectiveness, take opportunity cost into account, distribute costs and benefits fairly, and respect human rights. Current newborn screening policy does not meet these requirements.

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)

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)