title: 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.
authors.affiliation: Washington University School of Medicine, Department of Surgery, 660 S. Euclid Ave., St. Louis, MO 63110, USA. freemanb@wustl.edu
authors.forename: Bradley D
authors.initials: BD
authors.lastname: Freeman
authors.forename: Carie R
authors.initials: CR
authors.lastname: Kennedy
authors.forename: Dragana
authors.initials: D
authors.lastname: Bolcic-Jankovic
authors.forename: Alexander
authors.initials: A
authors.lastname: Eastman
authors.forename: Ellen
authors.initials: E
authors.lastname: Iverson
authors.forename: Erica
authors.initials: E
authors.lastname: Shehane
authors.forename: Aaron
authors.initials: A
authors.lastname: Celious
authors.forename: Jennifer
authors.initials: J
authors.lastname: Barillas
authors.forename: Brian
authors.initials: B
authors.lastname: Clarridge
mesh_terms: D001290:Attitude; D003422:Critical Care / Q000941:ethics; D016638:Critical Illness; D036281:Genetic Research / Q000941:ethics*; D014644:Genetic Variation; D006801:Humans; D007362:Intensive Care Units; D007872:Legal Guardians / Q000523:psychology; D035842:Research Subjects / Q000523:psychology