Increasing access for genetic services for the Indiana Plain population

The Indiana Plain population, including the Amish and Mennonite communities, has a high rate of rare, genetic diseases due to a founder effect and endogamous practices. A paucity of locally-available, specialized genetic services has led to highly preventable morbidity and mortality, especially among children. Plain community members must travel long distances to seek proper services for affected individuals. However, community proscriptions against both health insurance and operating mechanized vehicles has led to prohibitive out-of-pocket costs, causing many community members to not seek proper care for genetic disorders. A lack of genetic education and counseling and a preference for homeopathic remedies has resulted in vulnerability of the community to exploitation by individuals claiming to have a naturopathic “cure” for these disorders.

Due to these barriers, the northern Indiana Amish community along with the Indiana Hemophilia & Thrombosis Center have partnered together to create The Community Health Clinic, Inc. (CHC). This non-profit, community-based clinic aims to reduce these obstacles by providing locally-available, specialized genetic healthcare services, genetics education, access to contribute to genetic and genomic research through a local, community-governed bioresource repository, and a reduction of healthcare costs through bill negotiation services and an in-house Public Health Service pharmacy. The CHC has begun to assess the rate of genetic disorders in the Indiana Plain communities. Results from this initial assessment identify a high prevalence of potentially undiagnosed genetic disorders, underscoring the necessity for genetic services, local expertise in medical genetics, diagnostic testing, research, and education for the community.