Hastings Cent Rep
July 2018
In recent years, as newborn screening has expanded to include conditions for which treatment is questionable, new rationales for screening have proliferated. One such rationale is the potential reproductive benefit to parents from the detection of a genetic condition or carrier status in infants. An unanticipated consequence of invoking knowledge of reproductive risk as a major benefit of screening has been to open newborn screening to the charge that it constitutes state-sanctioned eugenics.
View Article and Find Full Text PDFA closer look at Stephen Jay Gould’s criticisms of Samuel Morton vindicates Gould’s accusations of racial bias in Morton’s cranial measurements.
View Article and Find Full Text PDFJ Hist Biol
December 2016
By the 1950s, eugenics had lost its scientific status; it now belonged to the context rather than to the content of science. Interest in the subject was also at low ebb. But that situation would soon change dramatically.
View Article and Find Full Text PDFImportance: To integrate the patient perspective into adverse event reporting, the National Cancer Institute developed a patient-reported outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE).
Objective: To assess the construct validity, test-retest reliability, and responsiveness of PRO-CTCAE items.
Design, Setting, And Participants: A total of 975 adults with cancer undergoing outpatient chemotherapy and/or radiation therapy enrolled in this questionnaire-based study between January 2011 and February 2012.
The standard approach for documenting symptomatic adverse events (AEs) in cancer clinical trials involves investigator reporting using the National Cancer Institute's (NCI's) Common Terminology Criteria for Adverse Events (CTCAE). Because this approach underdetects symptomatic AEs, the NCI issued two contracts to create a patient-reported outcome (PRO) measurement system as a companion to the CTCAE, called the PRO-CTCAE. This Commentary describes development of the PRO-CTCAE by a group of multidisciplinary investigators and patient representatives and provides an overview of qualitative and quantitative studies of its measurement properties.
View Article and Find Full Text PDFRobert FitzRoy, Captain of HMS Beagle and second governor of New Zealand, has two contradictory reputations among modern academics. Evolutionary biologists and Darwin scholars generally view FitzRoy as a supporter of slavery, famously quarrelling with the abolitionist Darwin over that topic during a Brazilian stopover early in the voyage of HMS Beagle. He is also regarded as a political and religious reactionary, taking a biblically creationist position at the infamous 1860 Oxford meeting of the British Association for the Advancement of Science.
View Article and Find Full Text PDFPurpose: The National Cancer Institute's Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) is a library of question items that enables patient reporting of adverse events (AEs) in clinical trials. This study contributes content validity evidence of the PRO-CTCAE by incorporating cancer patient input of the relevance and comprehensiveness of the item library.
Methods: Cognitive interviews were conducted among patients undergoing chemotherapy or radiation therapy at multiple sites to evaluate comprehension, memory retrieval, judgment, and response mapping related to AE terms (e.
Marriage between first cousins is highly stigmatized in the West and, indeed, is illegal in 31 US states. But is the hostility to such marriage scientifically well-grounded?
View Article and Find Full Text PDFStud Hist Philos Biol Biomed Sci
June 2008
In this paper, we show that the question of the relative importance of innate characteristics and institutional arrangements in explaining human difference was vehemently contested in Britain during the first half of the nineteenth century. Thus Sir Francis Galton's work of the 1860s should be seen as an intervention in a pre-existing controversy. The central figure in these earlier debates-as well as many later ones-was the philosopher and economist John Stuart Mill.
View Article and Find Full Text PDFAm J Med Genet C Semin Med Genet
February 2008
In the 1960s, patient advocacy groups were instrumental in efforts to mandate state testing of newborns for phenylketonuria (PKU), a recessively inherited disorder of phenylalanine metabolism. Advocacy groups have continued to actively lobby for the expansion of screening to other conditions detectable in newborns and, currently, for states' adoption of a uniform core screening panel. They have also been generally favorable to the offer of fee-based supplemental screening services.
View Article and Find Full Text PDFThis 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.
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