Pathways to Genetic Screening: Patient Knowledge - Patient Practices

The purpose of this project is to illuminate the processes by which genetic screening and genetic concepts of health and illness penetrate two contrasting communities and become integrated into the health concerns of high-risk families. The goal is to clarify the cultural frames used to process new genetic information and to explore both barriers and bridges to successful genetic interventions. High risk young men and women in their reproductive years will be studied. Those who have used genetic services will be compared with those who have not. The social networks and extended family members of those whose lives have been touched by the targeted genetic disorders will be examined. The project will also focus on issues of privacy, stigma, and discrimination identified in earlier research and their management within family and institutional networks. The understandings, interest, and responses will be analyzed in two cultural contexts; one in which the disorder is generally recognized as race-linked, and the other in which this association is not part of the popular consciousness. This will contribute to culturally sensitive genetic screening and counseling. (Co-funded with DOE)