Troy Duster, et al.
Institute for the Study of Social Change, University of California, Berkeley, CA 94705
The proliferation of genetic screening and testing is requiring increasing numbers of Americans to integrate genetic knowledge and interventions into their family life and personal experience. This study examines the social processes that occur as families at risk for two of the most common autosomal recessive diseases, sickle cell disease (SC) and cystic fibrosis (CF), encounter genetic testing. Since each of these diseases is found primarily in a different ethnic/racial group (CF in European Americans and SC is African Americans), this research will clarify the role of culture in integrating genetic testing into family life and reproductive planning. A third type of genetic disorder, the thalassemias, has recently been added to our sample in order to extend our comparative frame to include other ethnic and racial groups. In California, the thalassemias primarily affect Southeast Asian immigrants, although another risk group is from the Mediterranean region. Thalassemias, like cystic fibrosis and sickle cell disease, have a similar pattern of inheritance and raise similarly serious bio-medical challenges and issues of information management.
Data are drawn from interviews with members of families in which a gene for CF, SC or thalassemia has been identified. Data collection consists primarily of focused interviews with approximately 400 individuals from families in which at least one member has been identified as having a genetic disorder (or trait). In the most recent phase of the research, we are conducting focus groups selected to achieve stratified homogeneity around key social dimensions such as gender and relationship to disease. This is clarifying the social processes that facilitate and inhibit genetic testing.
We are currently assessing the concerns expressed by respondents about the potential uses of genetic information. We find strong patterns of concern, often based on personal experience, that genetic information may be used in ways that family members perceive as dangerous and/or discriminatory. First among these concerns is fear of losing access to health care. Additional concerns include fear of genetic discrimination in employment and other types of insurance, particularly life insurance. Similar patterns of concern exist among members of each ethnic group, and are frequently the focus of attention among family members, but take somewhat different form within each cultural group. These concerns constitute a growing obstacle to widespread use of genetic testing.
This work was supported by the Director, Office of Energy Research, Office of Health and Environmental Research of the United States Department of Energy under contract DE-FG03-92ER61393.