Consent for genetic research in a general population: The NHANES experience

Abstract

Purpose: To determine the sociodemographic factors associated with consent for storage of DNA for future genetic research. Methods: Analysis of the characteristics of consenting individuals participating in the National Health and Nutrition Examination Survey, a nationally representative survey of the US household population. Results: In 1999, 84% (95% confidence interval 82.4-85.6) of eligible participants consented to have their blood samples included in a national repository for genetic research. In 2000, 85.3% (95% confidence interval 84.0-86.6) consented. Females and black participants in both years were least likely to consent (1999, 82.2% and 73.2%; 2000, 83.6% and 81.3%, respectively). An assessment by logistic regression demonstrated that in both years only non-Hispanic black race/ethnicity was a significant independent predictor for not consenting to future genetic research. Conclusion: Although non-Hispanic black individuals have overall response rates similar to those of the other racial/ethnic groups, they are less likely to agree to have a blood sample saved for future genetic research. In balance, however, these findings demonstrate wide acceptance among survey participants for allowing storage of specimens for future genetic research across many demographic variables.