Genetic Medical Clinic in Kentucky: A Needs Assessment of Anabaptist Households

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