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.
|Freeman, Bradley D; Bolcic-Jankovic, Dragana; Kennedy, Carie R et al. (2016) Perspectives of Decisional Surrogates and Patients Regarding Critical Illness Genetic Research. AJOB Empir Bioeth 7:39-47|
|Freeman, Bradley D; Butler, Kevin; Bolcic-Jankovic, Dragana et al. (2015) Surrogate receptivity to participation in critical illness genetic research: aligning research oversight and stakeholder concerns. Chest 147:979-88|
|Clarridge, Brian R; Bolcic-Jankovic, Dragana; LeBlanc, Jessica et al. (2015) Does difficulty functioning in the surrogate role equate to vulnerability in critical illness research? Use of path analysis to examine the relationship between difficulty providing substituted judgment and receptivity to critical illness research partici J Crit Care 30:1310-6|
|Iverson, Ellen; Celious, Aaron; Kennedy, Carie R et al. (2014) Factors affecting stress experienced by surrogate decision makers for critically ill patients: implications for nursing practice. Intensive Crit Care Nurs 30:77-85|
|Bolcic-Jankovic, Dragana; Clarridge, Brian R; LeBlanc, Jessica L et al. (2014) Exploring determinants of surrogate decision-maker confidence: an example from the ICU. J Empir Res Hum Res Ethics 9:76-85|
|Iverson, Ellen; Celious, Aaron; Shehane, Erica et al. (2013) Critical illness research involving collection of genomic data: the conundrum posed by low levels of genomic literacy among surrogate decision makers for critically ill patients. J Empir Res Hum Res Ethics 8:53-7|
|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|
|Freeman, Bradley D; Kennedy, Carie R; Bolcic-Jankovic, Dragana et al. (2012) Considerations in the construction of an instrument to assess attitudes regarding critical illness gene variation research. J Empir Res Hum Res Ethics 7:58-70|
|Iverson, Ellen; Celious, Aaron; Kennedy, Carie R et al. (2012) Real-time perspectives of surrogate decision-makers regarding critical illness research: findings of focus group participants. Chest 142:1433-9|
|Freeman, B D; Kennedy, C R; Frankel, H L et al. (2010) Ethical considerations in the collection of genetic data from critically ill patients: what do published studies reveal about potential directions for empirical ethics research? Pharmacogenomics J 10:77-85|