Women’s Willingness to Share Information and Participation in Prenatal Care Systems

With the expanded use of computerized databases to gather information, a concomitant interest in using databases for public health purposes has developed. The authors investigated correlates of consenting to participate in such databases. The Regional Perinatal Data System combines electronic birth certificate information with questions asked of all women delivering a livebirth. Each woman is asked to consent to share information with 1) her obstetric provider, 2) her infant’s pediatric provider, and 3) an immunization registry. From 1996 to 1999, women who responded to the consent question and whose livebirth did not result in death or adoption were included. Odds ratios with 95% confidence intervals denoted the magnitude of association for refusing consent. Women who were "self-pay" (odds ratio = 2.0, 95% confidence interval: 1.7, 2.4), foreign born (odds ratio = 1.9, 95% confidence interval: 1.7, 2.1), and aged 40 or more years (odds ratio = 2.0, 95% confidence interval: 1.6, 2.3) were more likely to refuse to share data. Women eligible for but not participating in the Special Supplemental Nutrition Program for Women, Infants, and Children were significantly more likely to not share their information with others (odds ratio = 1.5, 95% confidence interval: 1.3, 1.6), after controlling for confounders. Refusing to share information with other sources is not random, and women refusing consent often do not participate in publicly available programs.