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Considerations in the construction of an instrument to assess attitudes regarding critical illness gene variation research.


ABSTRACT: Clinical studies conducted in intensive care units are associated with logistical and ethical challenges. Diseases investigated are precipitous and life-threatening, care is highly technological, and patients are often incapacitated and decision-making is provided by surrogates. These investigations increasingly involve collection of genetic data. The manner in which the exigencies of critical illness impact attitudes regarding genetic data collection is unstudied. Given interest in understanding stakeholder preferences as a foundation for the ethical conduct of research, filling this knowledge gap is timely. The conduct of opinion research in the critical care arena is novel. This brief report describes the development of parallel patient/surrogate decision-maker quantitative survey instruments for use in this environment. Future research employing this instrument or a variant of it with diverse populations promises to inform research practices in critical illness gene variation research.

SUBMITTER: Freeman BD 

PROVIDER: S-EPMC3297487 | biostudies-literature | 2012 Feb

REPOSITORIES: biostudies-literature

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Considerations in the construction of an instrument to assess attitudes regarding critical illness gene variation research.

Freeman Bradley D BD   Kennedy Carie R CR   Bolcic-Jankovic Dragana D   Eastman Alexander A   Iverson Ellen E   Shehane Erica E   Celious Aaron A   Barillas Jennifer J   Clarridge Brian B  

Journal of empirical research on human research ethics : JERHRE 20120201 1


Clinical studies conducted in intensive care units are associated with logistical and ethical challenges. Diseases investigated are precipitous and life-threatening, care is highly technological, and patients are often incapacitated and decision-making is provided by surrogates. These investigations increasingly involve collection of genetic data. The manner in which the exigencies of critical illness impact attitudes regarding genetic data collection is unstudied. Given interest in understandin  ...[more]

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