Consent for genetic research in a general population: An update on the National Health and Nutrition Examination Survey experience

Purpose: The study determines the consent rates for storage of biologic samples for future research with and without genetic studies and describes trends in sociodemographic factors associated with consent. Methods: We performed an analysis of the characteristics of consenting individuals participating in three data cycles of the National Health and Nutrition Examination Survey, a nationally representative survey of the U.S. population. Results: In the 1999 to 2000 and the 2001 and 2002 surveys, 84.8% and 90.1% of eligible participants, respectively, consented to have their biologic samples including DNA stored in a national repository. Female and non-Hispanic black participants were least likely to consent when genetic studies and DNA were included. In the 2003 to 2004 survey, with the discontinuation of the DNA collection, 98.4% signed the consent document and these race/gender differences were no longer observed. Conclusion: Females and non-Hispanic blacks consistently had lower consent rates during the survey years when genetic studies were mentioned in the consent, but once DNA collection was discontinued these differences disappeared. These findings demonstrate wide acceptance among survey participants for allowing storage of specimens for future studies but indicate the need to explore race/gender issues with the collection and storage of DNA for genetic research.