Residual newborn screening samples for research: parental information needs for decision-making.

Abstract

Purpose: The purpose of this research was to identify what types of information expectant parents want to make a decision about the use of their babies' residual dried blood specimens for research.

Design and methods: Three focus groups were conducted with pregnant women and their partners and one focus group with prenatal healthcare providers and educators.

Results: Eleven categories of information needs were identified within each focus group.

Practice implications: Providing sufficient information for parents to make informed choices will be essential to future research with residual dried blood specimens and to maintain public trust with the growing applications of this important public health program.