The purpose of the proposed project is to deepen empirical understanding of reproductive genetic services in rural areas, through a comparative case study of genetic counseling, testing, and related services among rural and urban residents of Kentucky. The study explicitly seeks to describe and analyze regional variation in experiences and uses of reproductive genetic services as linked to intersections of place, culture, and policy (""""""""routes of access""""""""). The study will address the following specific, inter-related aims: 1. To achieve a clearer understanding of how prenatal screening and genetic testing services are provided and experienced across socio-geographic regions of a substantially rural state. 2. To identify """"""""routes of access"""""""" (determined by intersections among place, policy and culture) to reproductive genetic services in Kentucky. 3. To identify whether and how these routes of access may be affected by the dynamics of state policy concerning health, genetic services and pregnancy termination. 4. To examine through in-depth interviews with parents who have experienced the birth of a child with a severe genetic condition issues of access to, and perspectives on, reproductive genetic services, particularly for rural residents.
Kelly, Susan E (2009) Choosing not to choose: reproductive responses of parents of children with genetic conditions or impairments. Sociol Health Illn 31:81-97 |