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)

An overview of the history of the concept of matter highlights the fact that alternative modes of explanation were successively employed. With the discovery of irrational numbers the initial conviction of the Pythagorean School collapsed and was replaced by an exploration of space as a principle of understanding. This legacy dominated the medieval period and had an after-effect well into modernity—for both Descartes and Kant still characterized matter in spatial terms. However, even before Galileo the mechanistic world view slowly entered (...) the scene—the world as chaos, particles in motion. Elevating movement to become the guiding principle in our understanding of matter dominated the main tendency of modern physics until the (end of the) 19th century. The discovery of irreversible processes (radio-activity for example) directed 20th century physics towards an exploration of the meaning of energy-operation. It turned out that even within 20th century physics long-standing legacies prevailed, because an account of the nature of matter continued to be torn apart by atomistic and holistic views—confronted by the problem of constancy and change (radical transformability versus persistence). Concrete, material reality exceeds the scope of any single mode of explanation—an insight that also serves a better understanding of the wave-particle duality. (shrink)