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)

I have argued in other work that emotion, attentional functions, and executive functions are three interpenetrant global state variables, essentially differential slices of the consciousness pie. This paper will outline the columnar architecture and connectivities of the PAG (periaqueductal gray), its role in organizing prototype states of emotion, and the re-entry of PAG with the extended reticular thalamic activating system (“ERTAS”). At the end we will outline some potential implications of these connectivities for possible functional correlates of PAG networks that (...) are just starting to be mapped. Overall, we will look at many lines of evidence that PAG should be conceptualized as a peri-reticular structure that has a foundational role in emotion, in generating the meaningful organization of behavior by the brain through prototype emotional states, and in allowing the various emotional systems to globally influence and tune both the forebrain and brainstem. Finally, we address implications of these concepts for what is currently understood about consciousness, underlining the need for somewhat more humility within consciousness studies about our current level of understanding of consciousness in the brain, combined with a deeper appreciation of the intrinsic connections between emotion and consciousness. One hopes that more concerted empirical interest in structures underneath the thalamus, combined with a deeper appreciation for the fundamental role that organismic and social value must have in bootstrapping awareness in the developing brain, would begin more widely to influence the fundamental lines of neuroscientific research in both emotion studies and consciousness studies. (shrink)

Although epistasis is at the center of the Fisher-Wright debate, biologists not involved in the controversy are often unaware that there are actually two different formal definitions of epistasis. We compare concepts of genetic independence in the two theoretical traditions of evolutionary genetics, population genetics and quantitative genetics, and show how independence of gene action (represented by the multiplicative model of population genetics) can be different from the absence of gene interaction (represented by the linear additive model of quantitative (...) genetics). The two formulations converge with weak selection but not with strong selection or, for multiple loci, when the aggregated interaction terms are not negligible. As a result of the different formulations of gene interaction, the presence or absence of linkage disequilibrium,/D/, does not necessarily indicate the presence or absence of fitness epistasis. Indeed, linkage disequilibrium is generated in ‘additive’ models in quantitative genetics whenever two (or more) loci experience simultaneous selection. As a research strategy, it is often practical, for theoretical or experimental reasons, to minimize gene interaction by assuming independence of gene action in regard to fitness, or by assuming linear additive effects of multiple loci on a phenotype. However, minimizing the role of epistasis in theoretical investigations hinders our understanding of the origins of diversity and the evolution of complex phenotypes. (shrink)

The four principles approach to biomedical ethics (4PBE) has, since the 1970s, been increasingly developed as a universal bioethics method. Despite its wide acceptance and popularity, the 4PBE has received many challenges to its cross-cultural plausibility. This paper first specifies the principles and characteristics of ancient Chinese medical ethics (ACME), then makes a comparison between ACME and the 4PBE with a view to testing out the 4PBE's cross-cultural plausibility when applied to one particular but very extensive and prominent cultural context. (...) The result shows that the concepts of respect for autonomy, non-maleficence, beneficence and justice are clearly identifiable in ACME. Yet, being influenced by certain socio-cultural factors, those applying the 4PBE in Chinese society may tend to adopt a "beneficence-oriented", rather than an "autonomy-oriented" approach, which, in general, is dissimilar to the practice of contemporary Western bioethics, where "autonomy often triumphs". (shrink)

Filosofische beschouwingen over de ontwikkeling van het volkenrechtelijke begrip mensenrechten.

Children, because of age-related reasons, are a vulnerable population, and protecting their health is a social, scientific and emotional priority. The increased susceptibility of children and fetuses to environmental agents has been widely discussed by the scientific community. Children may experience different levels of chemical exposure than adults, and their sensitivity to chemical toxicities may be increased or decreased in comparison with adults. Such considerations also apply to unborn and newborn children. Therefore, research on children is necessary in both clinical (...) and environmental fields, to provide age-specific relevant data regarding the efficacy and safety of medical treatments, and regarding the assessment of risk from unintended environmental exposure. In this context, the stakeholders are many, including children and their parents, physicians and public health researchers, and the society as a whole, with its ethical, regulatory, administrative and political components. The important ethical issues are information of participants and consent to participate. Follow-up and protection of data should be discussed in the context of biobanks, where children obtain individual rights when they become adults. It is important to realise that there are highly variable practices within European countries, which may have, in the past, led to differences in practical aspects of research in children. A number of recommendations are provided for research with children and environmental health. Environmental research with children should be scientifically justified, with sound research questions and valid study protocols of sufficient statistical power, ensuring the autonomy of the child and his/her family at the time of the study and later in life, if data and samples are used for follow-up studies. When children are enrolled, we recommend a consent dyad, including parental informed consent and the child’s assent and/or informed consent from older minors. For evaluation of the studies including children, a paediatrician should always be involved in the research ethics committee. (shrink)

This paper examines whether the modern bioethical principles of respect for autonomy, beneficence, non-maleficence, and justice proposed by Beauchamp and Childress are existent in, compatible with, or acceptable to the leading Chinese moral philosophy—the ethics of Confucius. The author concludes that the moral values which the four prima facie principles uphold are expressly identifiable in Confucius’ teachings. However, Confucius’ emphasis on the filial piety, family values, the “love of gradation”, altruism of people, and the “role specified relation oriented ethics” will (...) inevitably influence the “specification” and application of these bioethical principles and hence tend to grant “beneficence” a favourable position that diminishes the respect for individual rights and autonomy. In contrast, the centrality of respect for autonomy and its stance of “first among equals” are more and more stressed in Western liberal viewpoints. Nevertheless, if the Confucian “doctrine of Mean” and a balanced “two dimensional personhood” approach are properly employed, this will require both theorists and clinicians, who are facing medical ethical dilemmas, of searching to attain due mean out of competing moral principles thus preventing “giving beneficence a priority” or “asserting autonomy must triumph”. (shrink)