The Paul sisters were raised in Dayton, where their grandfather had owned and operated a farm, passed down to their father. Born ten years apart, the sisters lived in a segregated neighborhood, attended, and graduated from a segregated school. They both left for careers before returning to the area. In their interview, they described their family's history, segregation in Dayton, the differences between white and black schools, the effect of Brown v. Board, their career paths, changes in Dayton, and what they'd like to see in the future.
NATASHA BONHOMME is a chief strategy officer at Genetic Alliance.Her work involves bringing families' perspectives into policy setting concerning screening and diagnosis throughout the perinatal period as well as using health-communications principles to bring the lived experience of women and children into the health sector.
This essay uses the case of PKU as a portal through which to view shifting and contested views about genetics and reproductive behavior. In the early 1960s, the development of an effective therapy for PKU converged with the development of a test that could reliably detect the condition in newborns. As a result, infants born with the condition were enabled to reach adulthood and reproduce. However, by the early 1980s, a "second-generation" effect of screening was manifest, whereby many infants born to women who had been salvaged by screening were themselves severely damaged. In the 1940s, Lionel Penrose employed the case of PKU to demonstrate what was wrong with eugenics. Twenty years later, it would be used to illustrate why controls on reproduction were needed.
Abstract This article shows how Darwinian theories and writings play a vital role in shaping scientific and popular attitudes on questions related to human breeding. It lays the theoretical groundwork for eugenics and a large number of statistical studies demonstrate national decline in Britain. Evolution is driven by a global struggle among such units for living space and raw materials. This article argues that the laws of inheritance applied to humans just as much as they did to other animals, and that mental and temperamental as well as physical traits were inherited from both parents. It further discusses the importance of laws of inheritance in improving human populations through breeding that were limited by ignorance of the laws of inheritance. The understanding to these laws increases the perspectives of this work.
In this article, we discuss the radical uncertainties unleashed by expanded prenatal genetics.We show how we are now routinely screening fetuses in the absence of two essential sorts of information.At the population level, we do not have sound, unbiased data about the prevalence, penetrance, and clinical variability of most mutations.At the level of the proband, it is often too soon to discern relevant information about the fetus' phenotype.First, we outline the longstanding ethical objections to newborn screening for poorly understood genetic anomalies and disorders, and explain how it limits our understanding of their penetrance and variability.Next, we contrast the strong restrictions and regulations around newborn screening with the more laissez-faire framework for prenatal screening, using the rollout of non-invasive prenatal testing (NIPT) as the timeliest and most illuminating example.We show how new conditions are added to NIPT kits based on technological feasibility and profit motive, leading to widespread prenatal screening for incompletely understood genetic disorders.Finally, we explore the myriad dilemmas that 'screening before we know' creates for counsellors, caregivers, and prospective parents in the age of non-invasive prenatal genetic screening, and argue for an approach that openly embraces the radical uncertainties we face.
Journal Article Paul A. Lombardo. Three Generations, No Imbeciles: Eugenics, the Supreme Court, and Buck v. Bell. Baltimore: Johns Hopkins University Press. 2008. Pp. xiv, 365. $29.95 Get access Paul A. Lombardo. Three Generations, No Imbeciles: Eugenics, the Supreme Court, and Buck v. Bell. Baltimore: Johns Hopkins University Press. 2008. Pp. xiv, 365. $29.95. Diane B. Paul Diane B. Paul University of Massachusetts at Boston Search for other works by this author on: Oxford Academic Google Scholar The American Historical Review, Volume 114, Issue 4, October 2009, Pages 1103–1104, https://doi.org/10.1086/ahr.114.4.1103 Published: 01 October 2009
Sheldon Reed coined the expression “genetic counseling” in 1947, the same year he succeeded Clarence P. Oliver as Director of the University of Minnesota's Dight Institute for Human Genetics. In reflections written more than a quarter-century later, Reed noted that the term had occurred to him “as a kind of genetic social work without eugenic connotations.” Sharply distinguishing the aims of eugenics and counseling, he explained that whereas the former promotes the interests of the larger society, the latter serves the interests of individual families—as families perceive them. Reed never denied that he or other postwar medical geneticists were concerned with population improvement. But he maintained that counseling served a different purpose. Commenting on the history of the Dight Institute, Reed asserted: “There were certainly no attempts to benefit society as a whole in dealing with these families. This was not thought of as a program of eugenics.”
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