The Emergence of Amish Genetic Studies: A Brief History of Collaboration and Reciprocity

Abstract

Since the 1960s, Amish genetic studies has become a significant arena of collaboration between medical researchers and Old Order Anabaptists. This article describes the origins of and early actors in this field of research and pushes beyond the handful of cursory accounts that focus exclusively on Dr. Victor McKusick, central though he was, to include the critical contributions of other researchers, physicians, and Amish liaisons. The collective work of these individuals quickly pointed to four areas of ongoing inquiry: the cultural context of health and illness, documentation of known but very rare conditions, identification of previously undocumented conditions and diseases, and demography. A remarkable feature of this early research was its interdisciplinary nature and its collaborative engagement with Amish people. That collaboration resulted not only in numerous medical breakthroughs, but also in expanded settlement directories and updated family genealogies, which Amish communities embraced, replicated, and came to regard as valuable community resources.