Abstract
Newborn screening project for the Old Order Amish
Highlights
There are several reasons why Old Order Amish communities are conducive to genetic studies: they are a closed population with little gene inflow, they have a small number of founding members, and their genealogical records are extensive.[3]
Over 90% of pregnant women referred to the project by midwives and other healthcare workers have opted to have newborn screening.[4]. This has ensured that children born with the genetic diseases being screened for are identified and treated.[5] interview [conducted by jeffrey law]
As the medical director of the Medical Genetics Program of Southwestern Ontario, Dr Victoria Siu has a longstanding history with Western University
Summary
There are several reasons why Old Order Amish communities are conducive to genetic studies: they are a closed population with little gene inflow, they have a small number of founding members, and their genealogical records are extensive.[3]. In 2003, a targeted newborn screening project was established to screen the Old Order Amish population for four specific treatable disorders: juvenile glaucoma, cystic fibrosis, galactosemia, and cystinosis.[4] The ongoing screening project values collaboration with community elders and healthcare providers and has gained recognition and acceptance in the community: over 300 babies have been screened over 8 years.[4] Over 90% of pregnant women referred to the project by midwives and other healthcare workers have opted to have newborn screening.[4] This has ensured that children born with the genetic diseases being screened for are identified and treated.[5] interview [conducted by jeffrey law]
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