Culture and Family Interpretation of Genetic Disorders

The overall aim of this ethnographic and longitudinal project is to assess how parents from different cultural backgrounds who have a child or who are at risk for having a child with a genetic disorder seek out, understand, and use knowledge (including information received during genetic counseling and evaluation) to interpret genetic disorders and their experiences, and to make decisions about reproduction, health, and services. A collaborative team of genetic, social science, and education researchers will employ systematic interview and observation methods to study 130 families who are referred to a medical genetics counseling program for counseling and/or evaluation. One hundred families (40 African American, 40 European American, 10 Latino, and 10 Native American) who attend and 30 families (10 African American, 10 European American, 5 Latino, and 5 Native American) who choose not to attend will be followed over a two year period. Employing systematic analyses based on anthropological theories and methods, investigators will examine data from detailed observations of the clinical genetics visit and a series of semi-structured, face-to-face interviews with parents to provide a comprehensive view of

- how parents understand and are directed by information disseminated during the clinical session;

- what other sources of information and beliefs (e.g., biomedical, popular or ethnocultural models of the gene and inheritance; religious beliefs) parents draw on to make sense of disability and genetic disorder;

- the process of how they piece together various knowledges and beliefs;

- and how they make decisions for themselves and their child based on their interpretations and experience.

Analysis will also focus on the differences in these outcomes based on family and child characteristics.