Document Detail

Perspectives of surrogate decision makers for critically ill patients regarding gene variation research.
MedLine Citation:
PMID:  23154525     Owner:  NLM     Status:  MEDLINE    
PURPOSE: We undertook this investigation to explore the manner in which surrogate decision makers for critically ill patients perceived genetic data collected in the context of clinical investigation.
METHODS: Surrogate decision makers for critically ill patients cared for in intensive care units of two urban hospitals participated in focus groups designed to explore perceptions regarding gene variation research.
RESULTS: Surrogate decision makers were generally familiar with genetic concepts and reported that they could provide an informed opinion regarding permitting (or declining) the participation of their loved ones in gene variation research. Respondents perceived the risk associated with this type of research largely as the risk associated with acquiring the sample (i.e., whether it involved an invasive procedure or not) but appreciated that genetic samples could provide information not readily obtained from nongenetic sources. Concerns about potential misuse of genetic data largely centered on misconduct, paternity, forensic applications, and insurance and employment discrimination. Although surrogate decision makers expressed that their loved ones would have interest in return of results and being recontacted for future use, these interests were secondary to confidentiality concerns.
CONCLUSION: Respondents perceived genetic and nongenetic data as comparable. Informed consent processes that provide clear information regarding confidentiality protections, specimen handling, and parameters for future use may enhance enrollment.Genet Med 2013:15(5):368-373.
Ellen Iverson; Aaron Celious; Carie R Kennedy; Erica Shehane; Alexander Eastman; Victoria Warren; Bradley D Freeman
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Publication Detail:
Type:  Journal Article; Research Support, N.I.H., Extramural     Date:  2012-11-15
Journal Detail:
Title:  Genetics in medicine : official journal of the American College of Medical Genetics     Volume:  15     ISSN:  1530-0366     ISO Abbreviation:  Genet. Med.     Publication Date:  2013 May 
Date Detail:
Created Date:  2013-05-07     Completed Date:  2013-10-22     Revised Date:  2014-07-31    
Medline Journal Info:
Nlm Unique ID:  9815831     Medline TA:  Genet Med     Country:  United States    
Other Details:
Languages:  eng     Pagination:  368-73     Citation Subset:  IM    
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MeSH Terms
Critical Illness*
Genetic Research / ethics*
Health Care Surveys
Health Knowledge, Attitudes, Practice
Middle Aged
Third-Party Consent*
Grant Support

From MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine

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