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

Ellen Iverson; Aaron Celious; Erica Shehane; Mandy Oerke; Victoria Warren; Alexander Eastman; Carie R. Kennedy; Bradley D. Freeman

doi:10.1525/jer.2013.8.3.53

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

Ellen Iverson, Aaron Celious, Erica Shehane, Mandy Oerke, Victoria Warren, Alexander Eastman, Carie R. Kennedy, Bradley D. Freeman

Research output: Contribution to journal › Article › peer-review

2 Scopus citations

Abstract

Critical illness clinical trials that entail genomic data collection pose unique challenges. In this qualitative study, we found that surrogate decision makers (SDMs) for critically ill individuals, such as those who would be approached for study participation, appeared to have a limited grasp of genomic principles. We argue that low levels of genomic literacy should neither preclude nor be in conflict with the conduct of ethically rigorous clinical trials.

Original language	English (US)
Pages (from-to)	53-57
Number of pages	5
Journal	Journal of Empirical Research on Human Research Ethics
Volume	8
Issue number	3
DOIs	https://doi.org/10.1525/jer.2013.8.3.53
State	Published - Jul 2013

Keywords

Critical illness
Genomic research
Intensive care unit

ASJC Scopus subject areas

Education
Communication
Social Psychology
Law

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10.1525/jer.2013.8.3.53

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Iverson, E., Celious, A., Shehane, E., Oerke, M., Warren, V., Eastman, A., Kennedy, C. R., & Freeman, B. D. (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. Journal of Empirical Research on Human Research Ethics, 8(3), 53-57. https://doi.org/10.1525/jer.2013.8.3.53

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. / Iverson, Ellen; Celious, Aaron; Shehane, Erica et al.
In: Journal of Empirical Research on Human Research Ethics, Vol. 8, No. 3, 07.2013, p. 53-57.

Research output: Contribution to journal › Article › peer-review

Iverson, E, Celious, A, Shehane, E, Oerke, M, Warren, V, Eastman, A, Kennedy, CR & Freeman, BD 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', Journal of Empirical Research on Human Research Ethics, vol. 8, no. 3, pp. 53-57. https://doi.org/10.1525/jer.2013.8.3.53

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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

Abstract

Keywords

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