Archived Project Information
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 STAR-G Project officially ended in 2004, but the Hawai‘i Department of Health continues to maintain and update the STAR-G website and parent fact sheets.What are the Financial, Ethical, Legal, and Social Issues?
Tandem mass spectrometry (MS/MS) was first applied to newborn screening in the early 2000’s. MS/MS allows us to screen newborns for over 24 disorders with just one simple test. Newborn screening using MS/MS (also known as expanded newborn screening) is quick, and it only requires a few drops of blood (the same amount of blood needed for regular newborn screening).
However, when it was first began, expanded newborn screening caused controversy among some health care providers. A few of the rare conditions detected by expanded newborn screening do not have proven effective treatments. Other conditions are so rare that health care providers are not sure whether expanded newborn screening will be able to accurately detect them. Finally, some providers are concerned with the issue of informed consent for expanded newborn screening. Currently, most states mandate screening of all infants unless parents object. This process is called informed dissent. With informed consent, on the other hand, newborn screening would not be done unless parents agree to it.What Do Parents Want?
To find out what parents think about the issues surrounding expanded newborn screening, our project conducted several focus groups with mothers in Hawai‘i, California, Washington, and Alaska. Since the region for this project is so ethnically diverse and large in area, we wanted to make sure that our focus groups included mothers from traditionally underrepresented populations and both urban and rural settings. The locations and some of the unique characteristics of our focus groups are shown below:
|State||Unique Characteristics Included in the Focus Groups|
|Hawai`i||Mothers of Asian, Pacific Islander, and Native Hawaiian ancestry
Residents of urban cities
Residents of rural towns
|California||Spanish-speaking mothers of Hispanic ancestry|
|Washington||Mothers of African-American ancestry|
|Alaska||Mothers working in public health
Mothers of Alaskan Native ancestry
We found that the majority of the women participating in our focus groups approved of expanded newborn screening. They wanted to know whether or not their baby had a diagnosable condition even if an effective treatment was not available. Most women also supported mandatory newborn screening with informed dissent as long as they were educated about newborn screening prior to giving birth. Participants told us that the ideal time to educate parents about newborn screening is during the third trimester of the prenatal period.
In addition, we asked women hypothetical questions about screening newborns for conditions which do not occur until later in life, like Alzheimer disease or cancer. Not surprisingly, our participants were split over this complex issue. Some wanted to know everything they could about their child’s health. Others did not think this information was necessary.Where can I find more information?
We published our findings in the Public Health Genomics journal. Click here to read the abstract.