Halley and colleagues highlight important aspects of advocacy and justice in rare disease and provide recommendations for stakeholders to encourage progress toward equity and justice. In the rare d...

In the woods of Spring City, Pennsylvania, lies Pennhurst, a school for people with developmental and physical disabilities from 1908 to 1987. Like many institutions, Pennhurst eventually became a place of abuse and neglect. Pennhurst was finally shut down, and the residents were relocated into group homes. Two years ago, a group well educated about Pennhurst's past formed the Pennhurst Memorial and Preservation Alliance, a nonprofit dedicated to making Pennhurst into a national museum. Standing in the way of PM&PA's vision (...) was a businessman named Richard Chakejian, who purchased Pennhurst from the state for $2 million and has now converted it to a haunted house. The result is a bizarre hybrid of history and legend, and of criminality and commercialism, that simultaneously evokes and erases Pennhurst's troubled past. (shrink)

SummaryThis paper examines the role of health knowledge in the association between mothers' education and use of maternal and child health services in Ghana. The study uses data from a nationally representative sample of female respondents to the 2008 Ghana Demographic and Health Survey. Ordered probit regression models evaluate whether women's health knowledge helps to explain use of three specific maternal and child health services: antenatal care, giving birth with the supervision of a trained professional and complete child vaccination. The (...) analyses reveal that mothers' years of formal education are strongly associated with health knowledge; health knowledge helps explain the association between maternal education and use of health services; and, net of a set of stringent demographic and socioeconomic controls, mothers' health knowledge is a key factor associated with use of health services. (shrink)

A contemporary of William Shakespeare and Ben Jonson, Christopher Marlowe was one of the most influential early modern dramatists, whose life and mysterious death have long been the subject of critical and popular speculation. This collection sets Marlowe's plays and poems in their historical context, exploring his world and his wider cultural influence. Chapters by leading international scholars discuss both his major and lesser-known works. Divided into three sections, 'Marlowe's works', 'Marlowe's world', and 'Marlowe's reception', the book ranges from Marlowe's (...) relationship with his own audience through to adaptations of his plays for modern cinema. Other contexts for Marlowe include history and politics, religion and science. Discussions of Marlowe's critics and Marlowe's appeal today, in performance, literature and biography, show how and why his works continue to resonate; and a comprehensive further reading list provides helpful suggestions for those who want to find out more. (shrink)

This book is unique in presenting evidence on development across the lifespan across multiple levels of description. The authors use a well-defined disorder - Williams syndrome, to explore the impact of genes, brain development, behaviour, as well as the individual's environment on development.

The target article suggests inter-individual variability is a weakness of microbiota-gut-brain research, but we discuss why it is actually a strength. We comment on how accounting for individual differences can help researchers systematically understand the observed variance in microbiota composition, interpret null findings, and potentially improve the efficacy of therapeutic treatments in future clinical microbiome research.

The Philosophy Outreach Project gets high school students across Indiana thinking. POP creates alternative spaces for learning in classrooms, clubs, online, and conference settings. By curating philosophical content and fostering philosophical discussion, POP provides high school students with tools and a platform to engage with each other and the world. POP is run by three teams of Ball State students with a variety of different interests and backgrounds. POP's team includes students studying philosophy, psychology, English, communications, criminal justice, and more. (...) This diversity of interests and knowledge allows for an impressive level of collaboration, which is ultimately what makes POP successful in promoting and facilitating pre-college philosophy. (shrink)

This paper examines the characteristics of infectious diseases that raise special medical and social ethical issues, and explores ways of integrating both current bioethical and classical public health ethics concerns. Many of the ethical issues raised by infectious diseases are related to these diseases' powerful ability to engender fear in individuals and panic in populations. We address the association of some infectious diseases with high morbidity and mortality rates, the sense that infectious diseases are caused by invasion or attack on (...) humans by foreign micro-organisms, the acute onset and rapid course of many infectious diseases, and, in particular, the communicability of infectious diseases. The individual fear and community panic associated with infectious diseases often leads to rapid, emotionally driven decision making about public health policies needed to protect the community that may be in conflict with current bioethical principles regarding the care of individual patients. The discussion includes recent examples where dialogue between public health practitioners and medical-ethicists has helped resolve ethical issues that require us to consider the infected patient as both a victim with individual needs and rights and as a potential vector of disease that is of concern to the community. (shrink)

This paper examines the characteristics of infectious diseases that raise special medical and social ethical issues, and explores ways of integrating both current bioethical and classical public health ethics concerns. Many of the ethical issues raised by infectious diseases are related to these diseases’ powerful ability to engender fear in individuals and panic in populations. We address the association of some infectious diseases with high morbidity and mortality rates, the sense that infectious diseases are caused by invasion or attack on (...) humans by foreign micro‐organisms, the acute onset and rapid course of many infectious diseases, and, in particular, the communicability of infectious diseases. The individual fear and community panic associated with infectious diseases often leads to rapid, emotionally driven decision making about public health policies needed to protect the community that may be in conflict with current bioethical principles regarding the care of individual patients. The discussion includes recent examples where dialogue between public health practitioners and medical‐ethicists has helped resolve ethical issues that require us to consider the infected patient as both a victim with individual needs and rights and as a potential vector of disease that is of concern to the community. (shrink)

This wise, stirring book argues that the search for meaning can immeasurably deepen our lives and is far more fulfilling than the pursuit of personal happiness. There is a myth in our culture that the search for meaning is some esoteric pursuit--that you have to travel to a distant monastery or page through dusty volumes to figure out life's great secret. The truth is, there are untapped sources of meaning all around us--right here, right now. Drawing on the latest research (...) in positive psychology; on insights from George Eliot, Viktor Frankl, Aristotle, the Buddha, and other great minds; and on interviews with seekers of meaning, Emily Esfahani Smith lays out the four pillars upon which meaning rests. Belonging: We all need to find our tribe and forge relationships in which we feel understood, recognized, and valued--to know we matter to others. Purpose: We all need a far-reaching goal that motivates us, serves as the organizing principle of our lives, and drives us to make a contribution to the world. Storytelling: We are all storytellers, taking our disparate experiences and assembling them into a coherent narrative that allows us to make sense of ourselves and the world. Transcendence: During a transcendent or mystical experience, we feel we have risen above the everyday world and are connected to something vast and meaningful. To bring those concepts to life, Smith visits a tight-knit fishing village on the Chesapeake Bay, stargazes in West Texas, attends a dinner where young people gather to share their experiences of untimely loss, and more. And she explores how we might begin to build a culture of meaning in our schools, our workplaces, and our communities. Inspiring and story-driven, The Power of Meaning will strike a profound chord in anyone seeking a richer, more satisfying life. (shrink)

Children dependent on life-prolonging medical technology are often subject to a constant background risk of sudden death or catastrophic complications. Such children can be cared for in hospital, in an intensive care environment with highly trained nurses and doctors able to deliver specialised, life-saving care immediately. However, remaining in hospital, when life expectancy is limited, can considered to be a harm in of itself. Discharge home offers the possibility for an improved quality of life for the child and their family (...) but comes with significant medical risks.When making decisions for children, two ethical models predominate, the promotion of the child’s best interests or the avoidance of harm. However, in some circumstances, particularly for children with life-limiting and/or life-threatening illness, all options may be associated with risk. There are no good options, only potentially harmful choices.In this paper, we explore decisions made by one family in such circumstances. We describe a model adopted from risk management programmes beyond medicine, which offers a potential framework for identifying risks to the child that are morally permissible. Some risks and harms to a child, not ordinarily permitted, may be acceptable when undertaken in the pursuit of a specified desired good, so long as they are as low as reasonably practicable. (shrink)