Public Perspectives and Preferences on Newborn Screening: A Consumer Engagement Initiative

Objective:  Newborn screening (NBS) is a highly successful public health initiative reaching over four million babies annually in the US and identifying thousands with health conditions that benefit from early detection and treatment. As the number of conditions added to the state mandated NBS panels increase, and as NBS is presented in the media, it is vital that families feel a part of this system and informed of policies. However, little is known about public attitudes and communication preferences for NBS. The goal of the Consumer Focused Newborn Screening (CF-NBS) Quantitative Project is engage consumers at all levels, ensuring NBS advancements improve the system for individuals and families.

Design: Genetic Alliance partnered with the Genetics and Public Policy Center (GPPC) to develop the survey with input from the Genetic Alliance Consumer Task Force in Newborn Screening. Knowledge Networks^™ was contracted in October 2008 to conduct the web-enabled survey utilizing a nationally representative, random sample of participants.

Setting: Web-enabled survey.

Patients/Participants: 2,266 recent and prospective mothers ages 18-45. Recent mothers were defined as women who had given birth in the three years prior to the survey’s distribution; prospective mothers were defined as women who intended to become pregnant in the three years following the survey’s distribution.

Methods: GPPC conducted quantitative data analysis, analyzing responses to the 46 questions (10 mins) across education, income, and other demographic variables. 

Results:  Quantitative data analysis indicated that mothers need and want more information about NBS: 39% of recent mothers indicated they were either not given any or enough information about NBS. 63% of prospective mothers indicated they had not heard of NBS. A majority of respondents preferred to learn about NBS earlier in the prenatal period. The survey also showed wide support for NBS, with positive attitudes increasing with increased test accuracy.

Conclusion/Implications for nursing practice: The findings complement the results of qualitative research from the CF-NBS project with University of Maryland School of Medicine, which explores the impact of false positive results and carrier identification on families. Both projects will guide development of parent education tools and systems to support informed decision-making, and will provide data to policymakers to inform NBS system expansion. Implementation of the quantitative research findings have significant implications for the nursing community given its valuable role in patient education with regard to the care of women and newborns.

Keywords: newborn screening, education, public awareness, consumer perspectives, policy