Feasibility study for a statewide biobank to study preterm births and birth defects in Connecticut

Preterm births, which correlate with low birth weight, very low birth weight, and neonatal mortality, occur in the U.S. for roughly one in every ten births, and in Connecticut, a disproportionate percent of preterm births occurs among non-Hispanic Black/African American women. To facilitate biomedical investigations of the genetic and environmental factors that lead to preterm births and birth defects, the Connecticut Department of Public Health conducted a feasibility study for creation of a statewide population-based biobank of biological samples from pregnant donors. A group of experts from across the state was convened to meet monthly for four months, from June to September, 2007. The group established four hypothetical models for a biobank in the state, and evaluated these models against four specific criteria. These criteria were: the level of increased funding to the state from external sources; the level of increased research potential; affordability and sustainability; the degree to which ethical, legal, and social issues are addressed; the level of positive perception among subpopulations. Discussions were enhanced with guest presentations from across the country, and included comparison of the hypothetical models with other biobanks in the country. The group of experts concluded the deliberations with unanimous positive support for a population-based biobank in the state to address preterm births and birth defects. Policy, educational, and legislative recommendations for future steps were also developed.