Yeshiva University officially launched its new Program for Jewish Genetic Health with a ribbon-cutting ceremony in February. But the program’s roots go back much further than that.
Inspired by Yeshiva’s Tay-Sachs community screens of the 1970s, Dr. Susan Gross, medical director of the human genetics laboratory at the Jacobi Medical Center, launched a pilot effort five years ago to provide New York’s Jewish community with accessible and affordable testing for recessive genetic diseases.
The effort was such a success, with thousands of young couples tested at synagogues and universities across New York City and around the country, that last year Gross formalized a relationship between Yeshiva University and its affiliated Albert Einstein College of Medicine — and the program was born.
Gross didn’t want to stop with just prenatal screening, however. At its core, the program has two other pillars: community and rabbinical awareness, and providing support for the Jewish community around a multitude of genetic health issues. Gross spoke with the Forward about how the new program can help Jews with genetic health concerns.
What does it really mean to talk about “Jewish genetic health”?
It may just be words, but there’s something extremely positive about using the word “health.” We didn’t find it in the name of most Jewish genetic programs out there, although it is the underpinning of everything they do. Rather, we found a lot of emphasis on disease and disorder. But there are two aspects to health: One is preventative medicine; the other is therapies and cures — and it’s absolutely both of those that we’re after. Hopefully, the word “health” will lend a sense of empowerment to the Jewish community.
Beyond the name, what makes Yeshiva’s program different from other centers dedicated to Jewish genetics?
Let’s start with the more technical and mundane aspect: We’re based in New York. So, we have the largest center of Jewish life in our greater metro area. We are also affiliated with a Jewish university that was founded on the Jewish principle of “Torah u’mada” — which is the integration of Torah and secular knowledge such as science — and a medical school, which is really about moving those values into the health sphere. But, obviously, we have broader global and national aspirations here, and we have no interest in duplicating what other organizations do. We have decided that our primary mission and goal is to be a hub. We have an open-door policy, and we want to work with other organizations. So, it’s really a synergy moment.
How do your community genetic screening events work?
In certain communities, there’s a backlog of people wanting to get tested who simply can’t afford it. It’s not cheap, especially working through commercial labs and dealing with insurance issues. So, we came up with a way to make testing sufficiently affordable to break the logjam. A large portion of the money we raise for our program is set aside for individuals who are uninsured or underinsured, which means nobody will be turned away because of monetary issues. However, we first determine each individual’s insurance coverage so we don’t use donor funds unnecessarily. So far, we’ve helped facilitate the screening of 4,500 people here in New York City and other communities throughout the U.S., at cost.
What exactly is the “centralized resource and support center” that you’ve created?
That is our way of saying Jewish genetic testing and screening programs are super important, life-saving work. But with the explosion of genetics out there, we need to move forward with all the other genetic issues impacting our community as well. For example, Yeshiva is an avid supporter of Gift of Life, and we hope to work with them to help complete the Jewish bone marrow registries so no more lives are lost due to a lack of a donor match. We also want to work with groups such as Sharsheret, so we can face heritable breast cancer as a community with an eye on both prevention and cure. By saying “community resource center,” we want to be an access point for all the different disease-specific organizations and a “turn-to” for people in need.
What kind of biomedical research and development is the center currently conducting?
We’re currently looking at ways of further refining our platelet assay for Tay-Sachs. Our lab is the only one that offers this test, and its accuracy is excellent, but we’re looking at platform development using new computer technologies to see if we can process samples faster. One of the papers we just submitted is also about a relatively new mutation for Tay-Sachs. So, we’re actually trying to understand how this mutation alters enzyme function. This may not help the carrier-screening program in the short term, but we’re not going to get toward a cure or even treatment if we don’t understand this underlying gene better. As for research, we are in the early stages of collaborating with other organizations, but it is too early to discuss specifics.
Contact Elie Dolgin at firstname.lastname@example.org