Doctoral Dissertation Research: Cultural and Social Mediation of Diagnostic Genetic Technologies

Case Western Reserve University, Cleveland OH

Investigators

Abstract

Anthropologists have long been interested in the study of pregnancy and birth. While both are part of human biology and thus universal among human beings, how they are understood and experienced turns out to vary considerably from culture to culture across the globe. Findings from research into this phenomenon have given rise to a number of new questions, such as whether or not being being a member of one society rather than another affects how you experience your own biology and identity as an individual person. The research supported by this award will explore such questions through the lens of new genetic testing technologies. Because they are focused on individual genetic identity in the context of the genetic make-up of a society, genetic technologies afford a powerful site in which to investigate the relationship between biology, culture, and identity. Answering such questions is important not only for exploring the limits of biological determinism but also for designing healthcare programs and policies that serve the needs of culturally diverse populations. The research will be undertaken by Case Western Reserve University doctoral student, Sarah C. Miller-Fellows, under the supervision of Dr. Vanessa M. Hildebrand. The researcher will focus on how a community of Amish in Ohio have responded to their high burden of genetic disorders in the context of a distinct culture. The Old Order Amish have a high burden of genetic disorders due to founder effects. All 250,000 Amish alive today are descended from fewer than 4000 individuals, creating limited genetic diversity. Several Amish settlements, including the Ohio community that will be the focus of this research, have raised funds to create advanced centers for the study and treatment of the genetic diseases that most affect them. These clinics have transformed the prognosis of some of the more common Amish genetic disorders. Some diseases that once resulted in severe disability and early death are now manageable illnesses that do not seriously interfere with normal functioning. The researcher will collect data using a mix of social science methods including interviews with both Amish families and the healthcare providers who serve them; documenting the history and development of the clinic; and conducting participant observation in daily life and at community events. She also will conduct a series of repeated interviews with a sample of 30 Amish mothers who represent a range of experiences with genetic disorders. This will allow her to understand how both culture and technology, in the context of genetic disorder potential, influence the decisions that women and families make during pregnancy and birth. Findings from this research will improve understanding of how to create successful, community supported, culturally competent healthcare systems, how communities respond to genetic disorders, how new technology is mediated by culture, and how this particular technology influences reproductive behavior and concepts of self.