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

Bradley D. Freeman, Carie R. Kennedy, Dragana Bolcic-Jankovic, Alexander Eastman, Ellen Iverson, Erica Shehane, Aaron Celious, Jennifer Barillas, Brian Clarridge

Research output: Contribution to journalArticle

7 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)58-70
Number of pages13
JournalJournal of Empirical Research on Human Research Ethics
Volume7
Issue number1
DOIs
StatePublished - Feb 2012

Keywords

  • Critical illness
  • Genetic research
  • Intensive care unit
  • Surveys
  • Systematic review

ASJC Scopus subject areas

  • Social Psychology
  • Education
  • Communication

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    Freeman, B. D., Kennedy, C. R., Bolcic-Jankovic, D., Eastman, A., Iverson, E., Shehane, E., Celious, A., Barillas, J., & Clarridge, B. (2012). Considerations in the construction of an instrument to assess attitudes regarding critical illness gene variation research. Journal of Empirical Research on Human Research Ethics, 7(1), 58-70. https://doi.org/10.1525/jer.2012.7.1.58