Attitudes toward genetic testing of Amish, Mennonite, and Hutterite families with cystic fibrosis

Abstract

Background. We had the unique opportunity to study families with cystic fibrosis (CF) from an interrelated Amish-Mennonite kindred and from an isolated Hutterite kindred. Methods. While obtaining blood for DNA linkage analysis to help find the CF gene, we asked family members to answer a questionnaire about attitudes and feelings toward genetic testing. The questionnaire was also administered to families receiving care at the University of Rochester. After DNA-based CF carrier testing was developed, we asked the families whether they wanted to know the results. Results. Each cultural group felt differently about many issues. Between 31% and 78% approved of CF-carrier testing and 14% to 78% approved of prenatal diagnosis. The majority (59%) of Hutterite parents and siblings were opposed to carriers marrying carriers and most (82%) of the CF families wanted to know the results of carrier testing. Conclusions. Cultural differences need to be understood before genetic services are offered. Also, most CF mutations and their clinical correlates (phenotypes) will need to be defined. There are as few as three CF mutations in the Hutterite population. It will be possible to offer them the option to choose accurate genetic counseling. It will be difficult to offer genetic services to other populations with more heterogeneous attitudes and many more identified and yet-to-be-identified CF mutations.