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Full-Text Articles in Medicine and Health Sciences
Researcher And Institutional Review Board Chair Perspectives On Incidental Findings In Genomic Research, Janet Williams, Sandra Daack-Hirsch, Martha Driessnack, Nancy Downing, L. Shinkunas, D. Brandt, C. Simon
Researcher And Institutional Review Board Chair Perspectives On Incidental Findings In Genomic Research, Janet Williams, Sandra Daack-Hirsch, Martha Driessnack, Nancy Downing, L. Shinkunas, D. Brandt, C. Simon
Sandra Daack-Hirsch
Aims: Genomic research can produce findings unrelated to a study's aims. The purpose of this study was to examine researcher and Institutional Review Board (IRB) chair perspectives on genomic incidental findings (GIFs). Methods: Nineteen genomic researchers and 34 IRB chairs from 42 institutions participated in semi-structured telephone interviews. Researchers and chairs described GIFs within their respective roles. Few had direct experience with disclosure of GIFs. Researchers favored policies where a case by case determination regarding whether GIF disclosure would be offered after discovery, whereas IRB chairs preferred policies where procedures for disclosure would be determined prior to approval of the …
Context For Filipino Community Based Orofacial Cleft Prevention Interventions, Sandra Daack-Hirsch
Context For Filipino Community Based Orofacial Cleft Prevention Interventions, Sandra Daack-Hirsch
Sandra Daack-Hirsch
Among Filipinos of lower SES 1/500 babies are born yearly with an orofacial cleft. This is one of the highest birth prevalence of orofacial clefting in the world. The main purpose of this study was to obtain contextual information prior to planning for community based health interventions in the Philippines regarding orofacial clefting. A descriptive ethnography was used to describe working class Filipinos' (including healthcare workers') current beliefs about the causes, prevention, and treatment of orofacial clefting, and vitamin taking practices during pregnancy. Modifications of Kleinman's explanatory models were made to include questions about people's general and personal beliefs about …