University of Wisconsin-Madison researchers are working to expand newborn genetic screening for Wisconsin’s Amish and Old Order Mennonite, collectively known as Plain sect communities.
Researchers, led by Dr. Christine Seroogy, will pinpoint the unique genetic disorders affecting Plain sect communities in Wisconsin, and then design a low-cost screening to enhance current newborn genetic testing.
The project is being funded by the UW-Madison Baldwin Wisconsin Idea Endowment, and will receive $120,000 over the next three years, which began July 1.
Seroogy is a pediatric immunologist and associate professor at the UW School of Medicine and Public Health. She has worked with rural clinics over the past six years to try to enhance care for newborns in Amish communities.
"We want to be able to offer very rapid, low-cost confirmatory testing of genetic disorders," Seroogy said. "Additionally, it could be cost-saving, in that we are diagnosing the disorders early, which saves the families lots of diagnostic testing."
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Seroogy works to establish trust with families, but she says it’s not a major obstacle. She’s seen an attitude shift in genetic testing over the years.
"The Amish culture in general is not opposed to medical technologies. They’re also extremely pragmatic," she said.
Seroogy said she will make house visits to deliver complicated prognoses for genetic disorders. And UW Health has worked with Plain sect communities over the years to develop appropriate pay schedules, since patients are paying out-of-pocket for care.
Designing the genetic screening panel will take about eight months, followed by pilot studies in rural clinics early next year. Seroogy is collaborating with the Wisconsin State Laboratory of Hygiene and Dr. James DeLine with the Center for Special Children in La Farge.
Seroogy says Wisconsin’s Amish population doubles every 20 years, and continues to grow robustly.