Submitted by Hillels of Westchester
What we don't know can hurt us. It is naïve to turn a blind eye to that which we could know and that which could be helpful to our futures.
Underestimating the numbers of students on the campuses served by Hillels of Westchester that would even know what Jewish genetic diseases are, let alone those who would be interested in a personal screening, program directors Rabbi Mike Rothbaum and Ruth Kleinman reluctantly decided to participate in the Jewish Genetic Disease Consortium's (JGDC) screening.
The JGDC's website says the organization "is comprised of organizations sharing a common goal of combating Jewish genetic diseases. While each of the members individually strive to eradicate genetic diseases through research and education, as well as providing for the care for those affected by these diseases, the JGDC has formed to unite these organizations to strengthen education and awareness about genetic diseases that occur most frequently in the AJ population.
"The goal of the JGDC is to increase awareness about all of these diseases as well as encouraging and facilitating genetic testing for carrier status, which can ultimately prevent (or greatly reduce) the birth of affected children."
The JGDC obtained a grant from the March of Dimes to screen for 11 Jewish genetic diseases in college students in Westchester County. The most commonly known genetic diseases are Cystic Fibrosis and Tay-Sachs Diease; lesser known are Bloom's Syndrome and Canavan Disease, among others.
"A number of genetic disorders occur more frequently in certain ethnic groups. In the Ashkenazi Jewish population (those of Eastern European descent), approximately 1 in 5 individuals is a carrier of a gene for a condition that could be severe and may result in the early death of a child. Unfortunately, many people still believe that Tay-Sachs disease is the only Jewish genetic disease of concern and that it has been all but eradicated. The fact is, until we learn how to correct inherited genetic mutations, every generation of Ashkenazi Jews is at risk for passing on a gene for one of several diseases that occur more frequently in this population. The good news is that individuals can now be tested for all of these diseases with one simple blood test. Knowing your carrier status can help you to prevent tragedies in future generations." ~JGDC Website
We knew how much of a mitzvah it would be to provide this service for students but were very uncertain about whether or not the students on campus would appreciate it.
The first screening, hosted at the SUNY Purchase College campus was our trial run.
Program Director Ruth Kleinman worked with JGDC Project Coordinators Shari Ungerleider and Marion Yanovsky to discuss protocol, expectation and anticipated results, and logistics.
Health Services at Purchase helped Hillels of Westchester to spread the word about the screening, highlighting the value of the screening and knowledge, and emphasizing that it was 100 percent free to students. Being screened herself, she was able to encourage nervous students to participate, and through many elements of publicity (including flyers, facebook ads, campus-wide emails, table tents in various eateries, and word of mouth), strangers as well.
A junior at Purchase College said, "I decided to take the genetic screening test because I felt it was important to know the results one way or the other. I was nervous at first but I was also grateful that I could get tested for free."
Although appointments were preferred, walk-ups were permitted, tripling the number of anticipated people screened in two hours. With the large success of our first screening, we looked to our second one at Sarah Lawrence with great anticipation and planning with the JGDC and the Genetics Graduate Department.
At this screening, over 40 people were screened, through similar methods of outreach to the campus community. Having two screenings already completed, one final screening of the year is currently in the planning stages at Manhattanville College in March 2009.
An added benefit of the screenings was their value as engagement tools. Hillels of Westchester staff and student leaders had the opportunity to meet new faces on campus.
Program Director Ruth Kleinman said, "What an incredible gift it has been to provide this knowledge to students, and meet Jewish students in our community. What is this invaluable service that we have provided to our community? Knowledge – da'at. And with that, our community has been enriched."