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)

Background It has been suggested that researchers are obliged to offer summary findings to research participants to demonstrate respect for persons, and that this may increase public trust in, and awareness of, the research enterprise. Yet little research explores researchers' attitudes and practices regarding the range of initiatives that might serve these ends. Methods Results of an international survey of 785 eligible authors of genetics research studies in autism or cystic fibrosis are reported. Results Of 343 researchers who completed the (...) survey (44% response rate), the majority agreed that their team should (i) inform participants of summary findings (90.7%) and (ii) ensure they gain an awareness of developments in the field (86.9%). Additionally, the majority reported that in practice, their team (i) informs participants of summary findings (69.4%) and (ii) provides other types of relevant non-results information (eg, state of science in the field, opportunities for research participation) (67.9%). Conclusion Researchers endorsed the obligation of communicating with research participants by providing summary findings and other research-related information in equal measure. In light of these findings, it is suggested that while the provision of summary results may contribute to efforts to discharge the obligation of respect for persons, it may be neither a necessary nor a sufficient means to this end. (shrink)

The objectivity is a basic requirement for the measurements in the classical world, namely, different observers must reach a consensus on their measurement results, so that they believe that the object exists “objectively” since whoever measures it obtains the same result. We find that this simple requirement of objectivity indeed imposes an important constraint upon quantum measurements, i.e., if two or more observers could reach a consensus on their quantum measurement results, their measurement basis must be orthogonal vector sets. This (...) naturally explains why quantum measurements are based on orthogonal vector basis, which is proposed as one of the axioms in textbooks of quantum mechanics. The role of the macroscopicality of the observers in an objective measurement is discussed, which supports the belief that macroscopicality is a characteristic of classicality. (shrink)

The progress of electronic health technologies and biobanks holds enormous promise for efficient research. Evidence shows that studies based on sharing and secondary use of data/samples have the potential to significantly advance medical knowledge. However, sharing of such resources for international collaboration is hampered by the lack of clarity about ethical and legal requirements for transfer of data and samples across international borders. Here, the International Clinical Trial Center Network reports the legal and ethical requirements governing data and sample exchange (...) across four continents. The most recurring requirement is ethical approval, whereas only in specific conditions approval of national health authorities is required. Informed consent is not required in all sharing situations. However, waiver of informed consent is only allowed in certain countries/regions and under certain circumstances. The current legal and ethical landscape appears to be very complex and under constant evolution. Regulations differ between countries/regions and are often incomplete, leading to uncertainty. With this work, ICN illuminates the unmet need for a single international collaborative framework to facilitate DSE. Harmonising requirements for global DSE will reduce inefficiency and waste in research. There are many challenges to realising this ambitious vision, including inconsistent terminology and definitions, and heterogeneous and dynamic legal constraints. Here, we identify areas of agreement and significant difference as a necessary first step towards facilitating international collaboration. We propose the establishment of a working group to continue the comparison across jurisdictions, create a standardised glossary and define a set of basic principles and fundamental requirements for DSE. (shrink)

© 2015 Elsevier Inc.Toxoplasma gondii is a protozoan pathogen in the phylum Apicomplexa that resides within an intracellular parasitophorous vacuole that is selectively permeable to small molecules through unidentified mechanisms. We have identified GRA17 as a Toxoplasma-secreted protein that localizes to the parasitophorous vacuole membrane and mediates passive transport of small molecules across the PVM. GRA17 is related to the putative Plasmodium translocon protein EXP2 and conserved across PV-residing Apicomplexa. The PVs of GRA17-deficient parasites have aberrant morphology, reduced permeability to (...) small molecules, and structural instability. GRA17-deficient parasites proliferate slowly and are avirulent in mice. These GRA17-deficient phenotypes are rescued by complementation with Plasmodium EXP2. GRA17 functions synergistically with a related protein, GRA23. Exogenous expression of GRA17 or GRA23 alters the membrane conductance properties of Xenopus oocytes in a manner consistent with a large non-selective pore. Thus, GRA17 and GRA23 provide a molecular basis for PVM permeability and nutrient access. (shrink)

Keith Donnellan’s distinction between the attributive and referential uses of definite descriptions has spurred debates regarding the truth conditions of the utterance “the F is G” with definite descriptions used referentially. In this article, I present a semantic account of referential descriptions, grounded in the contextual factors of the utterance, including the speaker’s intention and presupposition as well as the interlocutor’s recognition of them. This account is called the IPR-semantic account, according to which the speaker’s intention (I), presupposition (P), and (...) the interlocutor's recognition (R) jointly determine whether “the F” in an utterance “the F is G” is used referentially or attributively, and the meaning of “the F” is determined by whether it is used referentially or attributively. Moreover, I argue that the meaning of the referential description “the F” is the intended object e, embodied with a property H that has prompted the speaker to presuppose that e is F and to intend to use “the F” to refer to e, as well as the interlocutor to recognize the presupposition and intention. According to the IPR-semantic account, the utterance “the F is G” with “the F” used referentially expresses a singular proposition, namely, that e is G, and it is true if and only if the intended object e is G. Additionally, I argue that the IPR-semantic account not only surpasses some alternative semantic accounts but also outperforms Kripke’s pragmatic account. (shrink)

While previous studies have suggested that there exists a relationship between obesity and executive function (EF), the mechanisms and causal relationship between them remain unclear. There are important clinical implications of determining whether EF can predict and treat obesity. We conducted a multilevel meta-analysis of randomized controlled trials (RCTs) and longitudinal studies. Specifically, we investigate (a) whether EF interventions have an effect on weight loss, (b) whether baseline EF can be a predictor of future weight loss through obesity intervention, and (...) (c) whether early-life EF can predict future weight loss. Eight RCTs and 17 longitudinal studies with a total of 11,393 participants were identified. We found that (a) EF interventions may not have an effect on weight loss, (b) baseline inhibition (β = 0.259,p= 0.03) and delay discounting (β = −0.17,p= 0.04) significantly predict future weight loss through obesity intervention, (c) age (F= 13.666,p= 0.005) moderates the relationship between working memory and weight loss through intervention, but not weight status, type of intervention, and percentage of female, and (d) early life inhibition (β = 0.185,p= 0.07) is a marginally significant predictor of future weight loss. Our results seem to support the assumption that the relationship between EF and obesity is not direct, and a higher-order factor, such as genes, may link obesity and EF. Building on the preliminary findings, further studies focusing on EF and obesity are needed in the future. (shrink)

In a realistic steady-state visual evoked potential (SSVEP) based brain-computer interface (BCI) application like driving a car or controlling a quadrotor, observing the surrounding environment while simultaneously gazing at the stimulus is necessary. This kind of application inevitably could cause head movements and variation of the accompanying gaze fixation point, which might affect the SSVEP and BCI’s performance. However, few papers studied the effects of head movements and gaze fixation switch on SSVEP response, and the corresponding BCI performance. This study (...) aimed to explore these effects by designing a new ball tracking paradigm in a virtual reality (VR) environment with two different moving tasks, i.e., the following and free moving tasks, and three moving patterns, pitch, yaw, and static. Sixteen subjects were recruited to conduct a BCI VR experiment. The offline data analysis showed that head moving patterns [F(2, 30) = 9.369, p = 0.001, effect size = 0.384] resulted in significantly different BCI decoding performance but the moving tasks had no effect on the results [F(1, 15) = 3.484, p = 0.082, effect size = 0.188]. Besides, the canonical correlation analysis (CCA) and filter bank canonical correlation analysis (FBCCA) accuracy were better than the PSDA and MEC methods in all of the conditions. These results implied that head movement could significantly affect the SSVEP performance but it was possible to switch gaze fixation to interact with the surroundings in a realistic BCI application. (shrink)

A compilation of all previously published writings on philosophy and the foundations of mathematics from the greatest of the generation of Cambridge scholars that included G.E. Moore, Bertrand Russell, Ludwig Wittgenstein and Maynard Keynes.

Bioethical issues are perplexing, profound, and politically divisive. The Lanson Lectures in Bioethics Series was founded in the belief that philosophical elucidation can clarify the nature of these difficult issues, and can lead to their resolution. The present volume collects the first five previously unpublished lectures delivered by five preeminent moral philosophers between 2016 and 2022. Drawing a distinction between two concepts of dignity, Jonathan Glover brings the distinction to bear on the issues of assisted suicide, embryo research, and genetic (...) choices. F. M. Kamm argues that doctors are morally permitted to intentionally cause death, or assist in its being intentionally caused, when either death is imminent anyway and intentionally causing it can alone stop the pain, or if the patient has already decided—not unreasonably—that death is his least bad option. On the question whether smokers who contract lung cancer are entitled to state-supported healthcare, T. M. Scanlon argues that the reasons that individuals have for wanting to engage in risky activities need to be compared with the relevant costs society has to bear to provide healthcare for those who suffer illness or injury as a result of these activities. Contrary to P. F. Strawson’s view that a psychiatrist can only “treat” an insane patient, Victor Tadros argues that it is often right to reason with, and communicate to, (nonresponsible) mentally ill persons. Peter Singer discusses questions pertinent to pandemics: How to distribute scarce medical resources and vaccines ethically? Whether to relax the standard for volunteers willing to participate in vaccines research? How to compare the trade-off between saving lives and saving the economy regarding lockdowns? How to prevent pandemics in future? These lectures are followed by critical commentaries by Alastair Campbell, Chun-Yan Tse, Peter Chau, Derek Baker, and Alexandre Erler respectively. Each commentary (except the inaugural lecture) is followed by a rejoinder. This book shows how moral philosophy can be brought to bear on bioethical issues by some of the best philosophical minds of our times. (shrink)

Regarded as the 'father of conservatism', Edmund Burke was one of the most versatile and accomplished thinkers of the eighteenth century. The first volume of F.P. Lock's acclaimed biography covers his Irish upbringing, early writing, and his parliamentary career throughout the momentous years of the American War of Independence.

The first volume of a new biography of Edmund Burke, one of the most profound, versatile, and accomplished thinkers of the eighteenth century. A writer and philosopher as well as an active politician, his speeches are still read and studied as classics of political thought, and through his best-known work, Reflections on the Revolution in France, he has exercised a profound posthumous influence as `the father of conservatism'.

This volume concludes Professor Lock's magisterial biography of Edmund Burke, one of the most influential political philosophers in the Western tradition. Covering the most interesting years of Burke's life, the leading themes are India and the French Revolution. Burke was a key figure in shaping long-term British attitudes to both.