The role of National Library of Medicine web sites in newborn screening education

Expanded newborn screening programs and subsequent detection of rare genetic disorders challenge parents and their medical providers to learn about the treatment and management of these disorders. Many people seek medical information on the Internet but may encounter requests for registration or fees, or find that resources are out of date, difficult to understand, or buried in advertisements. The U.S. National Library of Medicine (NLM), a component of the National Institutes of Health, provides web-based resources that address the challenges of newborn screening education. These resources include MedlinePlus, Genetics Home Reference, ClinicalTrials.gov, and PubMed. NLM websites are not commercial, do not require registration or fees, and provide varied levels of information for a continuum of audiences from low-literacy consumers to health professionals. Using phenylketonuria as an example, this study describes the information that parents and their medical providers can find through NLM resources. NLM has embraced the digital age and provides the public with reliable, accurate, and up-to-date educational materials.     

Origins of adolescents’ autobiographical memories

Adolescents (N = 46; M = 12.46 years) who had previously participated in a longitudinal study of autobiographical memory development narrated their early childhood memories, interpreted life events, and completed a family history questionnaire and language assessment. Three distinct components of adolescent memory emerged: (1) age of earliest memory and insight into life events; (2) volume of early memories; and (3) density of specific memories from early childhood. Children's language, self-awareness, and theory of mind during early childhood (19–51 months) all contributed to their memories as adolescents. However, adolescents’ early reminiscing environment was the best single predictor of the age and volume of their early memories and their insight into life events. In contrast, adolescents’ delayed self-recognition and reminiscing in early childhood predicted the density of their early memories. These findings provide partial support for theories of autobiographical memory development.     

Governing with Ignorance: Understanding the Australian Food Regulator’s Response to Nano Food

This paper examines regulatory responses to the presence of previously undetected and unlabelled nanoparticles in the Australian food system. Until 2015, the Australian regulatory body Food Standards Australia New Zealand (FSANZ) denied that nanoparticles were present in Australian food. However, and despite repeated claims from Australia’s food regulator, research commissioned by civil society group Friends of the Earth has demonstrated that nanoparticles are deliberately included as ingredients in an array of food available for sale in Australia. This paper critically examines how nanoparticles have come to be integrated into Australia’s food system under the radar of Australia’s food regulator. Our case study of FSANZ—including its responses to the civil society-led science that determined the existence of nanoparticles in Australian food—raises a number of important questions about the governance of risk in relation to emerging technologies such as nanotechnology. In this paper, we argue that FSANZ’ response to the presence of nanotechnology in Australia’s food system is an example of ‘governing with ignorance’. This is demonstrated via the denial and dismissal of science claims as a basis for limited regulatory intervention. FSANZ’ response intersects with the centrality of commercial interests in shaping science research and commercialisation, alongside the ‘hands off’ approach to regulation that is characteristic of neoliberal governance approaches. We conclude by arguing that in the current food governance framework, and alongside a paucity of impact science, civil society plays a vital role in attempts to democratise the Australian food system.