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 journalArticle

2 Citations (Scopus)

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 languageEnglish (US)
Pages (from-to)53-57
Number of pages5
JournalJournal of Empirical Research on Human Research Ethics
Volume8
Issue number3
DOIs
StatePublished - Jul 2013

Fingerprint

Critical Illness
decision maker
illness
literacy
Clinical Trials
Hand Strength
Research
participation
Literacy
Conflict (Psychology)

Keywords

  • Critical illness
  • Genomic research
  • Intensive care unit

ASJC Scopus subject areas

  • Education
  • Communication
  • Social Psychology
  • Law

Cite this

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; Oerke, Mandy; Warren, Victoria; Eastman, Alexander; Kennedy, Carie R.; Freeman, Bradley D.

In: Journal of Empirical Research on Human Research Ethics, Vol. 8, No. 3, 07.2013, p. 53-57.

Research output: Contribution to journalArticle

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