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Developing a conceptual framework to assess surrogate decision maker (SDM) insight into critical illness gene variation research (CIGVR)
Monday, October 31, 2011: 12:50 PM
Aaron Celious, PhD
,
Community Health Outcomes and Intervention Research Program, Childrens Hospital Los Angeles, Los Angeles, CA
Ellen Iverson, MPH
,
Division of Adolescent Medicine, Children's Hospital Los Angeles, Los Angeles, CA
Erica Shehane, MPH, MSW
,
Community Health Outcomes and Intervention Research Program, Childrens Hospital Los Angeles, Los Angeles, CA
Carie Kennedy, RN
,
Department of Surgery, Washington University School of Medicine, St. Louis, MO
Alex Easman, MD, MPH
,
Department of Surgery, UT Southwestern, Dallas, TX
Victoria Warren, RN
,
Department of Surgery, University of Texan Southwestern Medical Center, Dallas, TX
Mandy Oerke, RN
,
Department of Surgery, UT Southwestern, Dallas, TX
Jennifer Barillas
,
Department of Surgery, University of Texan Southwestern Medical Center, Dallas, TX
Bradley Freeman, MD
,
Department of Surgery, Washington University School of Medicine, St. Louis, MO
Background Critical illness gene variation research (CIGVR) is challenging. Diseases studied are acute and treatment rendered highly technological; patients are incapacitated with surrogate decision makers (SDMs) providing judgment. The timeframe for research enrollment is brief. Ethical conduct of CIGVR requires that SDMs understand the implications of such studies. We present a framework that may be useful to guide research enrollment that focus on 3 domains: (1) SDM knowledge/attitudes regarding genomics; (2) SDM knowledge/attitudes regarding clinical investigation; (3) complexity of SDM role (e.g., difficulty in making decisions, emotional stress, severity of patient's illness, etc.). We present findings related to the first domain and its relationship to SDM receptivity to research enrollment. Methods We invited SDMs for ICU patients at 2 tertiary care hospitals to participate in focus groups/interviews exploring attitudes about genomics. Session transcripts were coded and analyzed (Atlas.ti software) to identify common themes and inter-theme relationships. Results We screened 524 adult ICU admissions to identify 224 eligible patients (43%); 53 SDMs (22%) participated. Genomic knowledge varied with TV their primary source of information. . Participants responded that genomics could be used for forensic purposes, to establish paternity, or to enable cloning; many were unaware that genomics accounted for familial diseases. SDMs voiced concern regarding potential for employment/insurance discrimination, and were reluctant to permit CIGVR if use of the genetic sample was not well described. Conclusions Genomic knowledge was limited and shaped by mass media. Pertinent to consent processes, SDMs were interested in knowing intended sample usage and safeguards against discrimination.
Learning Areas:
Public health or related organizational policy, standards, or other guidelines
Learning Objectives: Learning Objectives:
At the end of this presentation, the audience participant will appreciate:
(1) The unique aspects and challenges of conducting gene variation research in the critical care setting.
(2) The baseline knowledge and attitudes of SDMs for critically ill patients regarding genomics and the challenges this baseline knowledge might represent to obtaining informed consent for research participation.
(3) The attractiveness of developing a conceptual model or framework designed to assess SDM insight and understanding of critical illness gene variation research.
Keywords: Genetics, Research Ethics
Presenting author's disclosure statement:Qualified on the content I am responsible for because: I am qualified to present because I conducted the focus groups and interviews and analyzed the data related to this research.
Any relevant financial relationships? No
I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines,
and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed
in my presentation.
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