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Open Access Highly Accessed Research

Factors influencing patient willingness to participate in genetic research after a myocardial infarction

David E Lanfear1*, Philip G Jones2, Sharon Cresci3, Fengming Tang2, Saif S Rathore4 and John A Spertus2

Author Affiliations

1 Henry Ford Hospital, Heart and Vascular Institute, Detroit, Michigan, 48202, USA

2 Mid-America Heart Inst, Kansas City, Missouri, 64134, USA

3 Washington University in St Louis, Department of Medicine, Division of Cardiology, St Louis, Missouri, 63108, USA

4 MD/PhD Program, Yale University School of Medicine, New Haven, Connecticut, 06510, USA

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Genome Medicine 2011, 3:39  doi:10.1186/gm255

Published: 15 June 2011

Abstract

Background

Achieving 'personalized medicine' requires enrolling representative cohorts into genetic studies, but patient self-selection may introduce bias. We sought to identify characteristics associated with genetic consent in a myocardial infarction (MI) registry.

Methods

We assessed correlates of participation in the genetic sub-study of TRIUMPH, a prospective MI registry (n = 4,340) from 24 US hospitals between April 2005 and December 2008. Factors examined included extensive socio-demographics factors, clinical variables, and study site. Predictors of consent were identified using hierarchical modified Poisson regression, adjusting for study site. Variation in consent rates across hospitals were quantified by the median rate ratio (MRR).

Results

Most subjects consented to donation of their genetic material (n = 3,484; 80%). Participation rates varied greatly between sites, from 40% to 100%. After adjustment for confounding factors, the MRR for hospital was 1.22 (95% confidence interval (CI) 1.11 to 1.29). The only patient-level factors associated with consent were race (RR 0.93 for African Americans versus whites, 95% CI 0.88 to 0.99) and body mass index (RR 1.03 for BMI ≥ 25, 95% CI 1.01 to 1.06).

Conclusion

Among patients with an MI there were notable differences in genetic consent by study site, but little association with patient-level factors. This suggests that variation in the way information is presented during recruitment, or other site factors, strongly influence patients' decision to participate in genetic studies.