Genetic Disorders; Mennonite; Amish; WeCare Clinic; Multifactorial Disorders
The purposes of this study are to (a) describe the process of collecting survey data related to un/diagnosed genetic disorders in Anabaptist households, and (b) determine the need for a genetic medical clinic in Kentucky. A six-page adapted survey questionnaire was utilized to collect family status, un/diagnosed genetic conditions, reproductive history, history of deceased children, and demographics. The questionnaire was mailed to over 2,000 households; addresses were collected from Anabaptist directories. Data suggest that more than one-third of households include a family member with an un/diagnosed genetic condition. Collectively, 120 diagnosed conditions and 90 undiagnosed conditions were reported. Half of all households reported a miscarriage, while less than five percent reported a stillbirth. Information obtained from this survey helped Anabaptist leaders proceed with establishing a genetic medical clinic.
The authors wish to thank Rebecca Evans for sharing her guidance in adapting a survey from the Community Health Clinic, Topeka, IN; Thomas M. Morgan of the Vanderbilt University Medical Center for helping to categorize the self-reported genetic/inherited disorders; the Anabaptist board members who helped guide the survey process; and the survey participants. This project was partly funded by a Western Kentucky University Quick Turn Around Grant.
Hunt, Matthew L., M. Susan Jones, M. Eve Main, Daniel Carter, Kevin Cary, and Matthew D. Hall. 2018. "Genetic Medical Clinic in Kentucky: A Needs Assessment of Anabaptist Households." Journal of Amish and Plain Anabaptist Studies 6(2):159-73.