On April 30, 2014, approximately 150 Amish and Mennonite family members—along with community practitioners and state and county health personnel—gathered at the Scenic Bluffs Community Health Center in Norwalk, WI, for a second community meeting on newborn screening and genetic disorders.
The meeting, organized by the Department of Pediatrics’ Christine Seroogy, MD, along with licensed midwife Gretchen Spicer and La Farge Medical Clinic physician James Deline, MD, continued a discussion that began nearly two years ago during a visit by Clinic for Special Children founder Holmes Morton, MD.
Their work aims to expand newborn screening, improve follow-up care of genetic diseases, and ultimately improve access to culturally appropriate, high-quality health care for all Amish and Mennonite children in Wisconsin.
Direct Involvement from Amish and Mennonite Families
The event began with a keynote address from Heng Wang, MD, PhD, medical director of the Das Deutsch Clinic for Special Needs Children in Middlefield, Ohio. Dr. Wang spoke about the origins of Das Deutsch Clinic, which was established 1999 with assistance from Dr. Morton.
Additional presentations included overviews of genetic diseases found in the Amish and Mennonite population, including congenital rubella syndrome, proprionic academia, maple syrup urine disease and severe combined immunodeficiency.
Faculty and bioethicists from the UW School of Medicine and Public Health (SMPH) also joined families in panel discussions on medical decision-making and how families experience genetic diseases—issues that have deep cultural importance in Amish and Mennonite communities.
At the end of the meeting, birth attendants could gain hands-on training in newborn screening. Dr. Wang also met with individual families at the community health center and even in their private homes.
“At this event, we had more direct involvement than before from Wisconsin Amish and Mennonite families,” Dr. Seroogy recalled. “In particular, the panel discussion on medical decision making went very well, and was one of the most moving parts of the day. It was a way to start addressing this important issue, and strengthened our ties with community partners, licensed midwives, and Amish and Mennonite community members.”
Building on Community Engagement Efforts
The event comes after nearly two years of engagement with a community advisory board comprising bishops and elders from Amish and Mennonite communities in Wisconsin, community practitioners, Wisconsin Department of Health Services staff and SMPH faculty.
That group meets in La Farge every three months to seek ways to improve health care delivery in Amish and Mennonite communities—while respecting the culture.
In addition, in 2013, Dr. Seroogy and geneticist Gregory Rice, MD, presented their work at the Genomic Medicine and the Plain Populations of North America Conference. This meeting, sponsored by the Clinic for Special Children, serves as a communication network between clinics that serve Amish and Mennonite populations.
Grant Supports Future Work
According to Dr. Seroogy, engagement efforts are starting to have an impact. In evaluations, families who attended the April event found the information helpful, would attend additional meetings in the future, and even suggested future topics.
And in June, one of the families Dr. Wang met in person came to the group’s first outreach clinic—held in La Farge and led by Dr. Rice—for a complete genetic screening.
Now, Dr. Seroogy and her colleagues hope to further develop their work through funding support from the Wisconsin Partnership Program (WPP).
They recently received a one-year opportunity grant from the WPP for approximately $100,000 to provide Amish midwives with additional education on newborn screening, broaden the outreach screening clinic and administer a community survey to better assess disease frequencies and health needs in the population.
“We are grateful to the Wisconsin Partnership Program for recognizing the importance of our work and providing essential financial support to carry our project forward,” Dr. Seroogy said. “This grant allows us to continue developing the key relationships and a diagnostic testing infrastructure to achieve our long-term goal for a health care delivery system for this population.”