What you need to know about Jewish Genetic Screening Awareness Week


Jordan Palmer, Chief Digital Content Officer

Did you know this week is Jewish Genetic Screening Awareness Week? If not, we wanted to make you aware because Jewish genetic diseases are incurable and the best defense against them is genetic screening.

Screening allows doctors to identify individuals who are carriers of particular diseases. Couples in which both partners are carriers for a particular disease have a number of options, including adoption, not having children, testing the fetus in utero, or in-vitro fertilization, in which embryos are tested for the disease and only implanted if they are healthy.

People are generally screened with one procedure that simultaneously tests for multiple diseases. Various recommended testing panels include the most common Jewish genetic diseases, though some procedures screen for as many as 100 different conditions.

Screening can often be performed at an OB/GYN office or at a medical genetics facility. JScreen, a national nonprofit, offers home screening kits by mail at a cost of $149 for those who have insurance. For those without, the price runs to $349, and the organization does offer financial assistance for those who need it.

To learn more, the Jewish Light reached out to Karen Grinzaid, the executive director of JScreen and certified genetic counselor.

Why should Jewish people be concerned about genetic testing in general? 

There are many genetic diseases, like Tay-Sachs and familial dysautonomia, that occur with higher frequency within the Jewish community. Reproductive genetic testing can help identify a couple’s risk for having a child with one of these diseases so they can plan for the health of their future children.

Ashkenazi Jews are also at higher risk for carrying mutations in their BRCA genes, which increases their risk for developing breast, prostate, ovarian and pancreatic cancer. If a person knows their hereditary cancer risk, they can be proactive about their health and take action to prevent cancer or detect it at an early, treatable stage.

Who should be tested and when? 

Reproductive genetic testing is recommended for anyone over 18 who will be starting or expanding their family. Cancer genetic testing is recommended for anyone age 21 or older who would like to learn their hereditary risk of cancer.

How can people get tested?

Step 1: Request a kit at JScreen.org

Step 2: Receive the kit in the mail and provide a saliva sample.

Step 3: Send the kit back in the pre-paid mailer.

Step 4: Get results. Certified genetic counselors will provide results through a telehealth appointment.

Can you explain the 2008 Genetic Info Act and why it’s important to know?

According to the 2008 Genetic Information Nondiscrimination Act (GINA), health insurance companies cannot change your coverage, eligibility or premiums based on the results of your genetic testing or the health conditions in your family. Other types of insurance, such as life, disability and long-term care, do not have restrictions about using your genetic information to set their plans; each state has its own mandates regarding the use of genetic information.

The GINA law also makes it illegal for employers with 15 or more employees to use your genetic information to make decisions about hiring, firing, promotion, pay, privileges or terms. In other words, your employer may not use family health history and genetic test results in making decisions about your employment. GINA’s health protections do not extend to the Tricare military health system, the Indian Health Service or employees of the federal government.

Please visit www.ginahelp.org for more information and exceptions to the law.

What else do people need to know about this that I have not asked you? 

Knowledge is power. Genetic testing gives people information that helps them stay healthy and plan for the health of their future families.