Kentucky Anabaptists' Knowledge of Newborn Screening

Abstract

The Plain Anabaptist population in Kentucky is growing, with the Amish population alone expected to double about every 20 years. Anabaptists in Kentucky are largely composed of Amish (both Old Order and New Order) and Old Order and Conservative Mennonites. All Anabaptists experience an increased incidence of recessive genetic disorders. Newborn screening (NBS) is a state-regulated program that identifies inherited and congenital disorders and conditions. The purpose of this study is to determine the knowledge of Kentucky Amish and Mennonite communities regarding NBS. A researcher-adapted questionnaire was mailed to Kentucky Amish and Mennonite households, and 292 respondents returned the questionnaire. The majority (85.2%) reported at least "a little" knowledge of NBS; however, only 6.8% reported "a lot" of knowledge. Respondents identified the midwife as the most common source of information related to NBS; however, 18% reported NBS was not offered by any provider. There was a statistically significant relationship between knowledge of NBS and children receiving NBS, indicating that knowledge of NBS increased participation in NBS. As the midwife is the most common source of NBS knowledge, an educational program for midwives as well as the Anabaptist communities throughout Kentucky is planned.