Ashkenazi young adults' knowledge, attitudes, and beliefs about carrier testing

There are two models for Jewish carrier testing. Dor Yeshorim tests young adults and keeps the results in a private database. When a couple starts dating, they contact Dor Yeshorim and provide unique identifiers. If both are carriers for the same genetic disease, they are advised not to pursue the relationship. Test results are not provided. Alternatively, individuals can be tested by a laboratory and receive their results. The number of carrier tests offered on the “Jewish panel” has grown from one to over 14. Diseases on the panel vary in terms of frequency in the population, severity of disease, penetrance of disease, and age of onset. There is controversy about what diseases ought to be on the panel. In the Jewish community single young adults are encouraged to be tested and Rabbis may recommend testing before a marriage. Little is known about how young adults feel about testing, whether they are receiving adequate informed consent, why they choose to test, or how they decide between the two models. We conducted eight focus groups with young adults in the Baltimore area. Groups were divided by sex, religiosity, and testing status. None of the groups that had received testing gave much though to the specific diseases that were on the panel. Reasons for testing, choice of testing approach, attitudes about informed consent, and thoughts on which diseases ought to be on the panel will be discussed highlighting differences between the sexes, religiosity, and testing status.