What is JScreen?
In the U.S., 40% of young Jewish men and women are unaware of their risk for having a child with a Jewish genetic disease and an astounding 76% have not been screened. Even fewer have been screened for the full panel of diseases that are more common in the Ashkenazi (central and eastern European) Jewish population (Source: Klein and Partners market research survey, June 2012). Community screenings and physician visits are simply not reaching everyone and that's where JScreen aims to help.
JScreen is a non-profit expanded carrier screening program dedicated to educating young Jewish men and women about their risks while making it as easy as possible to get screened. JScreen brings screening to individuals in the comfort of their own homes, which also allows us to reach those who have not had access to expanded screening.
- JScreen’s leadership team includes an elected member of the prestigious National Academy of Sciences.
- Almost three-quarters of Jewish adults age 22-39 have NOT had carrier screening.
- JScreen’s test is used in doctors’ offices throughout the United States.
How does JScreen work?
1. Get Started
Interested participants will access our website and choose a link indicating the desire to learn about carrier screening.
2. Learn about carrier screening
Participants will be directed to an online interactive program that will allow them to work through an educational curriculum.
3. Participant Screening
Participants will be tracked through the completion of the program to help ensure informed decision-making.
4. Complete Kit Request Form
Those who choose to move forward will input their personal information to the website, which electronically transfers the information through a secure mechanism to Emory University.
5. Information reviewed by Emory genetic counselors
A team of Emory genetic counselors will review participants’ information to ensure that pre-defined screening criteria are met. Emory will refer patients to genetic counselors within their national network for situations where a face-to-face consultation seems more appropriate.
6. Limited Financial assistance available
Participants indicating the need for financial assistance will be contacted to determine eligibility.
7. Private physician referral
For participants meeting the program’s criteria, a Program-affiliated physician will be added as the ordering physician. Private physician referrals will be obtained when required by the patient’s state of residence.
8. Testing kit sent to user
A saliva kit for genetic testing will be mailed directly to the participant’s home address.
9. Review Test Results
After the lab has performed testing, reports will be released via HIPAA-compliant electronic transfer to the Emory program for follow-up. Results will be reviewed and those that are negative will be released to participants directly via secure email notification. For those with positive screening results, the participant will be sent an email instructing them to schedule a phone consultation with a genetic counselor to discuss their results in detail.
10. One-on-One Counseling
Emory will then assist participants with arranging face-to-face counseling in their area if desired, as well as cascade screening of partners and at-risk family members.
11. Advanced Screening
JScreen uses sequencing technology on saliva, which will find the majority of Tay-Sachs carriers in all ethnic groups. In a small percentage of cases, a follow-up blood enzyme test is needed for clarification, and JScreen will let the participant know if that is needed.