Factors affecting maternal participation in the genetic component of the National Birth Defects Prevention Study-United States, 1997-2007

Abstract

Purpose: As epidemiological studies expand to examine gene-environment interaction effects, it is important to identify factors associated with participation in genetic studies. The National Birth Defects Prevention Study is a multisite case-control study designed to investigate environmental and genetic risk factors for major birth defects. The National Birth Defects Prevention Study includes maternal telephone interviews and mailed buccal cell self-collection kits. Because subjects can participate in the interview, independent of buccal cell collection, detailed analysis of factors associated with participation in buccal cell collection was possible.

Methods: Multivariable logistic regression models were used to identify the factors associated with participation in the genetic component of the study.

Results: Buccal cell participation rates varied by race/ethnicity (non-Hispanic whites, 66.9%; Hispanics, 60.4%; and non-Hispanic blacks, 47.3%) and study site (50.2-74.2%). Additional monetary incentive following return of buccal cell kit and shorter interval between infant's estimated date of delivery and interview were associated with increased participation across all racial/ethnic groups. Higher education and delivering an infant with a birth defect were associated with increased participation among non-Hispanic whites and Hispanics.

Conclusion: Factors associated with participation varied by race/ethnicity. Improved understanding of factors associated with participation may facilitate strategies to increase participation, thereby improving generalizability of study findings.

Figure 1. National Birth Defects Prevention Study: rates of participation in interview and buccal cell collection, 1997–2007

¹Centers did not start sending buccal collection kits until October 1999, more than 18 months after the start of the interviews.