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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 K. Williams, Sandra Daack-Hirsch, Martha Driessnack, Nancy R. Downing, L. Shinkunas, D. Brandt, C. Simon
Researcher And Institutional Review Board Chair Perspectives On Incidental Findings In Genomic Research, Janet K. Williams, Sandra Daack-Hirsch, Martha Driessnack, Nancy R. Downing, L. Shinkunas, D. Brandt, C. Simon
Nancy R Downing
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 …
Couples' Illness Representation And Coping Procedures In Prodromal Huntington Disease, Nancy Ruth Downing
Couples' Illness Representation And Coping Procedures In Prodromal Huntington Disease, Nancy Ruth Downing
Nancy R Downing
Huntington disease (HD) is a degenerative neurological disease that typically onsets in midlife. It leads to progressively severe impairment in cognitive, behavioral, and motor function and premature death. Persons who test positive for the HD gene expansion know they will develop the disease. Research indicates changes are detectable several years before onset. Thus, HD has a long prodromal period (prHD). While researchers are aware of changes, little is known whether persons with prHD or their companions notice changes, or how they make sense of and cope with them. Leventhal and colleagues developed the Common Sense Model of Illness Representation (CSM) …