Browsing by Author "Halverson, Colin M.E."

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    Assessing parental understanding of variant reclassification in pediatric neurology and developmental pediatrics clinics
    (Springer, 2021) Margolin, Amy; Helm, Benjamin M.; Treat, Kayla; Prucka, Sandra K.; Halverson, Colin M.E.; Medical and Molecular Genetics, School of Medicine
    Improvements in technology used for genetic testing have yielded an increased numbers of variants that are identified, each with a potential to return uninformative results. While some genetics providers may expect patients to be responsible for staying abreast of updates to their genetic testing results, it is unknown whether patients are even aware of the possibility of variant reclassification. Little research has assessed the comprehension and attitudes of parents of pediatric patients regarding reclassification of variants of uncertain significance (VUS). Semi-structured telephone interviews were conducted with parents (n = 15) whose children received a VUS from genetic testing in either the pediatric neurogenetics or developmental pediatrics clinics at Riley Hospital for Children in Indianapolis, Indiana. Most participants expressed understanding of the uncertainty surrounding their child's VUS test result. However, nearly half of participants shared that they had no prior knowledge of its potential reclassification. When asked whose responsibility it is to keep informed about changes to their child's VUS status, some participants stated that it belonged solely to healthcare providers - a distinctive finding of our study - whereas others felt that it was a joint responsibility between providers and the parents. We additionally found that some patients desire a support group for individuals with VUS. These results provide insight into the importance of pretest genetic counseling and the need for increased social and informational support for parents of children who receive inconclusive genetic testing results. We conclude that relying solely on the patient or guardian to manage uncertain results may be insufficient.
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    The First English Translation of the Ebers Papyrus
    (2023-03-01) Halverson, Colin M.E.; Hartsock, Jane A.
    Presentation slides for lecture delivered by Colin Halverson, PhD (Faculty Investigator, Indiana University Center for Bioethics) and Jane Hartsock, JD, MA (Director of the Department of Clinical and Organizational Ethics, Indiana University Health) on March 1, 2023. While the Ebers Papyrus is famous as one of the oldest and most complete contemporary perspectives on ancient Egyptian healing practices, little has yet been said about the biography of its first English-language translator, Dr. Carl H. von Klein. Von Klein, a German immigrant and surgeon in the American Midwest, and his linguist daughter Edith Zitelmann spent twenty-some years meticulously translating and annotating the papyrus, but the manuscript was ultimately destroyed. In this talk, Hartsock and Halverson examine the convoluted and dramatic history of the Ebers Papyrus and its “rediscovery” by Edwin Smith, and discuss the equally convoluted and dramatic societal- and personal-scale forces that thwarted von Klein and Zitelmann’s efforts to translate it. Presentation recording available online: https://purl.dlib.indiana.edu/iudl/media/019s06b61s