Screening for healthy genes: A model for Jewish Genetic Disease screening on college campuses

Background: 1 in 5 Ashkenazi Jewish individuals is a carrier of a gene for a genetic condition more common in this population. Screening for these conditions in young adults is critical to making informed reproductive decisions. Objective: To describe a model for screening for Jewish Genetic Diseases on college campuses. Methods: The model consists of an academic genetic hub, the Victor Center, funded by philanthropy, working in partnership with Jewish student volunteers at each college campus. The students work with the Victor Center outreach coordinator and Hillel campus staff to organize and fundraise for the screening event. Initial education is done by medical professionals, followed by peer-to-peer education in informal settings. The screening event is a half day at the campus's Hillel Center with student volunteers running the event and health professionals present to provide informed consent and draw blood. Results: Since 2002, we have conducted events on four college campuses (returning to one annually), screening over 750 students The carrier rate in this population was 1 in 5. The fund-raising on campus provided additional funds and helped raised awareness. The students were very receptive to screening at this stage of their lives when marriage and childbearing are not immediate issues. Learning about their status was seen as a positive and not frightening experience. Conclusions: A community-based program with students on college campuses was effective in increasing access to education and screening for a population at-risk for genetic conditions..