What if you were genetically screened before you and your spouse got pregnant, but then gave birth to a child with a severe illness that could have been prevented? You might despair and lose hope, but if you were Randy Gold, an Orthodox Jew from Atlanta, you’d vow to make sure this never happened to anyone else in your community. And that’s exactly what Randy and his wife, Caroline, did when they founded JScreen in 2012, a national non-profit organization based out of Emory University in Georgia which is revolutionizing the way the Jewish community gets genetically screened.
In 2009, the Gold’s 18-month-old daughter, Shaindy, was diagnosed with Mucolipidosis IV, a preventable Jewish genetic disease that causes developmental delays, vision impairment, and reduced life expectancy. Their first child, Netanel, was born healthy, but when Shaindy started having developmental issues, they discovered the awful truth. “Our experience with our doctor was no different than anyone’s experience with their own doctor,” explains Gold. “They have fifteen minutes with you annually…if you need to be screened for something, they don’t know what to screen you for….It was a true eye-opening moment when we realized that we fell into a trap that hundreds and hundreds of Jewish couples just like us had fallen into…We realized that there was this opportunity to change the world for young couples after us, we knew that it was something that we absolutely had to do.”
Gold grew up in a Conservative Jewish home in Charleston, South Carolina in which community involvement was crucial. He carried those values into his life as a young man in Atlanta where he became more observant and integrated into the Orthodox community there. “I never really expected that it would be easy, but frankly, not only has it been easy, it has been so enriching in my life.”
JScreen currently tests for carrier status in over 200 genetic conditions, including those affecting Ashkenazi, Sefardi and Mizrachi Jews. With state-of-the-art-technology, a highly-subsidized program allows users to conveniently send away for a kit and take their own saliva sample on their own time. The so-called Jewish panel that most doctors screen for does not cover even a fraction of the most common Jewish diseases. “Dor Yesharim has done a fantastic job of screening thousands of people over the years,” adds Gold, “however, they are very, very far behind the technology. So while Dor Yesharim will screen you, and they will keep your results anonymous from a potential partner and from you, they are only screening for a few diseases.”
The stigmas against being a carrier created the need for anonymous and blind testing. But now, not only is the technology so different, we have also come a long was as a compassionate society. “My wife and I may be carriers for a disease, but that doesn’t change who we are. We are perfectly normal, healthy people. The fact that someone might find out that they are a carrier has almost no impact on the individual, the siblings…the quality of the person.” JScreen therefore wants people to know their information and share it, thereby encouraging others to get screened. “You could be helping a family member that wouldn’t have otherwise known.”
“People don’t realize that even if you and your spouse are a carrier for a disease, there is a way to have a healthy child of your very own.” In fact, this is how the Gold’s third child, Shai Emunah, came to be. When Dor Yesharim started, that didn’t exist. JScreen wants the Jewish community to know all of the options that are available to a couple, other than just not getting married. “In today’s world, it’s hard enough for one nice Jewish boy to find one nice Jewish girl. Why should we be in the business of telling them they shouldn’t get married?”
The Golds didn’t want to adopt, or get a sperm or egg donor, so they looked into an IVF process in which eggs and sperm are harvested, in order to find the healthiest ones, which can be combined and implanted for a healthy embryo. Rabbis across the religious spectrum agree that this is a reasonable and appropriate method. Thankfully, from this, the Gold’s child was born healthy and happy.
Since JScreen’s inception, they have helped thousands of Jews. “People will come up to me with tears in their eyes, and say ‘Because of you, we have a healthy child.’…For us, just the idea that we are making an impact in one single person’s life would be enough, but to know that just across the country, families, grandparents, individuals are finding out information and having healthy children, I get goosebumps when I hear from people. It feels incredible to know that Shaindy has been able to change people’s lives…it’s in her merit.”
For more information, please visit JScreen.org.