Encouraging Couples to Explore their Genetic Makeupby Brie Stimson February 27, 2017
Sharon Glaser first started thinking about genetic testing when she was working as an educator years ago. She and the rabbi she worked with were approached by parents whose children had illnesses she and they didn’t understand and weren’t skilled to handle.
“All of that stuck in my head,” Glaser tells the San Diego Jewish Journal. Fast forward to 2009, Glaser attended a Jewish Federation conference in Los Angeles and a breakout session on Jewish genetic diseases.
“We have to do something,” Glaser says she told her brother and co-founder of Gene Test Now, Jerry Factor, at the time. They continued their research into Jewish genetic diseases and three years later they launched a nonprofit.
Their website, GeneTestNow.com, promotes education and advocacy for genetic testing focused on couples who are thinking about having a child. The organization aims to answer questions like “Why are there Jewish genetic diseases?” and “What if I test positive as a carrier for a Jewish genetic disease?”
“Our mission is to stimulate awareness, and in San Diego, for example, if we are able to publicize the issue, we hope that people … who are in a child conceiving situation … will ask for that service through their physician or their rabbi or some way,” co-founder Jerry Factor says.
Glaser says her nonprofit has helped screen about 1,000 people in Los Angeles, by connecting couples with genetic testing groups.
“It should have been 10,000,” Glaser bemoans.
Couples looking to conceive have the option of a blood or saliva test, and the whole process can cost around $100 with health insurance.
“It’s a subject that may not be on people’s minds,” Factor explains, “and in some cases they may not want to know how it is. It’s not a case of if you test positive then you are doomed. You’re not … both partners have to have the same carrier in order to have any exposure, and if they are in that situation there are things that can be done to … avoid having an impaired child.”
Genetic counsellor Daniella Kamara says there are several options for couples in which both partners test positive as carriers of a disease. For some, Kamara says, the 25 percent risk is low enough to continue with a natural pregnancy, which can then be monitored through amniocentesis or Chorionic Villus Sampling (CVS). Other couples may decide not to take any risk during pregnancy.
“Some people choose to either have an egg donor or a sperm donor who’s not a carrier for the same disease,” Kamara says. “Some people choose to have IVF – in vitro fertilization – where they actually will combine the egg and sperm in a dish and then they screen the embryos for that disease and they then implant embryos that are unaffected into the woman and she will then have a healthy pregnancy. [Or] some people choose to adopt.”
Genetic diseases are also not particular to Jews, and people who intermarry should still get tested, Factor says.
“My own sense is that everyone should be tested for all the genetic problems, not only Jewish but otherwise, to just know what their genetic makeup is.”
“Having the information kind of empowers people to make smart decisions and allows them to plan accordingly,” Kamara says. “It gives them a lot of options in terms of decision making when it comes to family planning.”
Glaser says the biggest problem is when a couple gets pregnant before they find out, which creates urgency and limits their options.
For Glaser, her work comes down to one thing – “I remember a young woman who I spoke to … She looked at me straight in the eye and she said ‘Sharon … I’m afraid, I don’t want to know.’ And that expression ‘I don’t want to know’ is something we have to penetrate and that’s the purpose of this whole thing.”
All three agree that knowledge is power.
“I think the biggest thing we’re advocating for is just that information empowers people and knowledge is power and by no means does seeking out information put people kind of into a box or trap them into doing certain things,” Kamara explains. “It’s all about just knowing what your options are and being prepared.”
Gene Test Now is in the process of expanding to San Diego and would welcome the opportunity to speak with synagogues and local Jewish groups to coordinate programs with genetic counselors. For more information on genetic counseling or to find a place to get tested go to genetestnow.com.