Genotyping of acutely ill patients as a component of clinical investigation is becoming increasingly common. Collection of genetic material from patients admitted to intensive care units poses unique logistical and ethical challenges not encountered in genotyping non-critically ill individuals. Conditions prompting ICU admission are frequently precipitous and life threatening, the care rendered is highly technological, diagnoses and treatments must frequently be provided expeditiously, and patients are often incapacitated with judgment provided by surrogate decision makers. The long-term objective of this proposal is to understand how the exigencies of acute illness impact perceptions of genetic testing, and how these perceptions are influenced by ethnic and demographic factors. This objective will be accomplished via two interrelated specific aims.
Specific aim 1 will utilize qualitative methodology to characterize personal, social, cultural and psychological dimensions that influence surrogate decision maker attitudes and perceptions pertaining to collection of genetic data in the critical care environment.
Specific aim 2 will utilize quantitative methodology to examine attitudes and perceptions of surrogate decision makers for critically ill patients regarding the ethical, legal, and social aspects of genetic technology and determine the extent to which these attitudes reflect those of the patients represented. Project Narrative This proposal is directly relevant to public health in that it will enhance understanding of the concerns of patients and surrogate decision makers from a broad ethnic and demographic background regarding application of genetic technology in the intensive care environment. Such understanding is essential not only to these directly affected parties, but to oversight bodies committed to safeguarding patients and to insuring that collection of genetic data from acutely ill individuals is accomplished in the most informed, transparent, and ethically rigorous manner possible.
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|Iverson, Ellen; Celious, Aaron; Kennedy, Carie R et al. (2013) Perspectives of surrogate decision makers for critically ill patients regarding gene variation research. Genet Med 15:368-73|
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