Tag: Mara Buchbinder

In a significant departure from established criteria for population screening, a 2006 report by the American College of Medical Geneticists (ACMG) argued that newborn screening may be justified by family and societal benefits even if the screened infant does not stand to benefit. The ACMG report has since been the...

What are the social consequences of the recent expansion of newborn screening in the United States? The adoption of new screening technologies has generated diagnostic uncertainty about the nature of screening targets, making it unclear not only whether a newborn will develop a disease but also what the condition actually...

Feminist and disability scholars have critiqued the role of prenatal testing technologies in fostering parental expectations to give birth to “perfect” children. However, in the case of postnatal screening for genetic disorders, identifying large numbers of asymptomatic infants brings previously hidden imperfections into critical relief. Consequently, newborn screening technologies have...

In this paper, I analyze the illness stories narrated by a mother and her 13-year-old son as part of an ethnographic study of child chronic pain sufferers and their families. In examining some of the moral, relational and communicative challenges of giving an account of one’s pain, I focus on...

A growing literature has drawn attention to the psychosocial impact of cancer on families with young children. However, to help families develop adaptive responses to chronic illness, recent scholarship has begun to advocate a shift in orientation from a deficit to a strengths perspective. In this article, the authors examine...

The transfer of responsibility for diabetes management from parent to child has been seen as a central challenge for the clinical care of adolescents with Type 1 diabetes. Research is needed to better understand how clinicians, patients, and families handle the delicate balance between parental involvement and adolescent responsibility for...

This article presents the findings from a review of ethnographic approaches to child care research. Ethnographic research has enhanced researcher and practitioner understandings of the child care environment by providing entry into the child care center as an important site not only of development and education, but also of social...