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Original Research: Critical Care Medicine |

Surrogate Receptivity to Participation in Critical Illness Genetic ResearchSurrogate Receptivity to Genetic Research: Aligning Research Oversight and Stakeholder Concerns

Bradley D. Freeman, MD; Kevin Butler, MS; Dragana Bolcic-Jankovic, MS; Brian R. Clarridge, PhD; Carie R. Kennedy, RN; Jessica LeBlanc, BA; Sara Chandros Hull, PhD
Author and Funding Information

From the Department of Surgery (Dr Freeman, Mr Butler, and Ms Kennedy), Washington University School of Medicine, St. Louis, MO; the Center for Survey Research (Mss Bolcic-Jankovic and LeBlanc and Dr Clarridge), Boston, MA; and the Center for Clinical Bioethics (Dr Chandros Hull), National Institutes of Health, Bethesda, MD.

CORRESPONDENCE TO: Bradley D. Freeman, MD, Washington University School of Medicine, Department of Surgery, Campus Box 8109, 660 S Euclid Ave, St. Louis, MO 63110; e-mail: freemanb@wustl.edu


FUNDING/SUPPORT: This study was supported by National Institutes of Health [Grant GM080591] and by the intramural research program of the National Human Genome Research Institute.

Reproduction of this article is prohibited without written permission from the American College of Chest Physicians. See online for more details.


Chest. 2015;147(4):979-988. doi:10.1378/chest.14-0797
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BACKGROUND:  Collection of genetic biospecimens as part of critical illness investigations is increasingly commonplace. Oversight bodies vary in restrictions imposed on genetic research, introducing inconsistencies in study design, potential for sampling bias, and the possibility of being overly prohibitive of this type of research altogether. We undertook this study to better understand whether restrictions on genetic data collection beyond those governing research on cognitively intact subjects reflect the concerns of surrogates for critically ill patients.

METHODS:  We analyzed survey data collected from 1,176 patients in nonurgent settings and 437 surrogates representing critically ill adults. Attitudes pertaining to genetic data (familiarity, perceptions, interest in participation, concerns) and demographic information were examined using univariate and multivariate techniques.

RESULTS:  We explored differences among respondents who were receptive (1,333) and nonreceptive (280) to genetic sample collection. Whereas factors positively associated with receptivity to research participation were “complete trust” in health-care providers (OR, 2.091; 95% CI, 1.544-2.833), upper income strata (OR, 2.319; 95% CI, 1.308-4.114), viewing genetic research “very positively” (OR, 3.524; 95% CI, 2.122-5.852), and expressing “no worry at all” regarding disclosure of results (OR, 2.505; 95% CI, 1.436-4.369), black race was negatively associated with research participation (OR, 0.410; 95% CI, 0.288-0.585). We could detect no difference in receptivity to genetic sample collection comparing ambulatory patients and surrogates (OR, 0.738; 95% CI, 0.511-1.066).

CONCLUSIONS:  Expressing trust in health-care providers and viewing genetic research favorably were associated with increased willingness for study enrollment, while concern regarding breach of confidentiality and black race had the opposite effect. Study setting had no bearing on willingness to participate.


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