About Us - Project Information

Tandem Mass Spectrometry (MS/MS) technology offers the opportunity to increase the number of conditions for which newborn infants can be screened. The goal of newborn screening is early identification of affected infants to ensure early and adequate treatment and connect them with the health care services they need. However, the new technology poses potential dangers, not all of which are well understood. State newborn screening programs need information about how implementation of this promising technology might adversely affect their populations, guidance about issues to consider in order to make wise decisions, and resources to implement the decisions they make.

The Screening, Technology And Research in Genetics (STAR-G) Project began as a multi-state collaborative effort, led by the Hawai`i Department of Health, to obtain research data, identify strategies and develop materials for addressing the financial, ethical, legal and social issues (FELSI) surrounding the use of MS/MS for neonatal metabolic screening of culturally and ethnically diverse populations. The project was funded by the Health Resources and Services Administration (HRSA) through a Special Projects of Regional and National Significance (SPRANS) grant.

The states (Alaska, California, Hawai`i, Idaho, Oregon and Washington) participating in this project represent three newborn screening models present in the country. California and Washington provide laboratory testing and follow-up services for only their own state. Alaska, Hawai`i, and Idaho contract their newborn screening laboratory services to a regional laboratory (Oregon Public Health Laboratory), but their state programs perform the follow-up services. Oregon, not only does its own laboratory testing and follow-up services for its own state, but contracts as a regional laboratory for other states.

The states participating in the project represent the most ethnically and culturally diverse areas in the country. Indigenous peoples, recent immigrants from all parts of the world, and descendents of the early settlers of the west are among the populations whose cultural values, beliefs and attitudes must be considered when planning a newborn screening program that will “serve both the individual and the public good.” Other differences between the participating states that influence newborn screening program decision-making include: population size (500,000 per year in California to 10,000 in Alaska); predominant health care financing models (Oregon has the highest proportion of the population enrolled in managed health care plans, Idaho has among the lowest); geography and population distribution; political climates; and, differences in public health genetics infrastructure. Working together allowed the states to benefit from each other's experiences and decrease duplication of effort, while allowing each state to meet its own needs.

At the start of the project, we performed needs assessments of program stakeholders to determine their needs surrounding expanded newborn screening using MS/MS. The results of the needs assessments were reviewed by the project Advisory Committee and prioritized. The final list of needs were:

1. Research parents' attitudes about the ethical, social and educational issues surrounding expanded newborn screening including screening for late on-set disorders.

2. Develop educational materials using community-based research data to meet the needs of parents and maximize effectiveness of newborn screening education.

3. Research and evaluate the cost of active informed consent and parental attitudes towards informed consent.

4. Develop educational tools for state programs to use.

Following the national guidelines for children with special health needs, the project collaborators made an effort to ensure that all project activities were family centered, community based and coordinate with current systems of care. Our activities included:

• Convening focus groups of mothers to discuss the financial, ethical, legal and social issues surrounding expanded newborn screening.
• Surveying parents about newborn screening educational materials.
• Developing disorder fact sheets for families and health care providers.
• Developing educational tools and guidelines for state newborn screening programs.
• Gathering data and analyzing the cost of active informed consent for expanded newborn screening.

This website contains information and products developed during the project. For further information about our project, please contact us.