Keywords
Genetic Disorders; Mennonite; Amish; WeCare Clinic; Multifactorial Disorders
Abstract
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.
Acknowledgements
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.
Recommended Citation
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.
ISSN
2471-6383