Financial, Ethical, Legal, and Social Issues

What are the issues?

Tandem mass spectrometry (MS/MS) is a type of technology that many state newborn screening programs are adopting. 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, expanded newborn screening is causing 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.

How did you try to find out what 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

What did you find out?

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 are currently in the process of analyzing the data we gathered during the project. We will be submitting our information for publication in peer reviewed journals and will post information about these articles soon. If you would like more information, please contact us.