Over the past two years, University of Pennsylvania students have grown accustomed to spitting in tubes.
Many line up weekly or twice-weekly for their routine COVID tests, swirling and spitting saliva without a second thought. In 2019, however, this sight would have been bizarre.
“At the time, it would have been like, what is this creature?” said Mallory Kovit, director of the Greater Philly Hillel Jewish Graduate Student Network.
2019 was the last time Greater Philly Hillel Network hosted a genetic screening pop-up in partnership with Penn and national nonprofit JScreen, where undergraduates and graduate students could pick up tests to screen for Jewish genetic diseases. Many chose to take the kits home, opting to provide the saliva sample in private.
But as odd as providing a saliva sample for genetic testing was two years ago, Kovit believes that will no longer be the case for Penn’s next genetic screening event, which she is hoping to plan for the near future.
“The COVID-19 pandemic has more or less brought people into a different kind of arena of public health,” she said. “Whether it’s a conversation about best practices for prevention of a disease, it’s all become a way more relevant conversation.”
While COVID has changed many health behaviors, making some more fearful of going to the grocery store or getting vaccinated, health professionals have noticed it’s opened the minds of young people and prospective parents getting screened for Tay-Sachs, BRCA genes — which increase risk of breast and ovarian cancers — and hundreds of other diseases of which Ashkenazi Jews are at increased risk.
Organizations such as JScreen have provided ways to complete genetic testing from home, even before the pandemic. Hillary Regelman, director of national outreach for JScreen, said that “COVID-friendly” remote screenings remained high during the pandemic, but that educational efforts increased, especially as the pandemic saturated the news cycle.
JScreen debuted its “Give a Spit” ad in Times Square on New Year’s Eve in 2021, hoping to get people to think twice about testing.
“We try to be fun and proactive on social media and make it very cool and catchy,” Regelman said. “Obviously, it’s a very serious topic, but we do it in a very easy-to-digest way.”
In the 1970s, when the Ashkenazi Jewish community brought the concern of Tay-Sachs to the forefront, genetic screening — though much more limited to what is done today — became heavily encouraged, Regelman said. For the children and grandchildren of this generation, the severity of Tay-Sachs 50 years ago has been largely forgotten, mostly thanks to the extensive push for genetic testing, but it remains a relevant practice for to-be parents.
“We really try to get people where they are because everyone is just not going to hear about us at their synagogue,” Regelman said.
Though Regelman’s concerns about getting young people tested aren’t unfounded, it appears that her fears may not come to fruition.
Dr. Chani Yondorf, part of Einstein Healthcare Network’s Prevention of Jewish Genetic Diseases service, has noticed patients approach her about genetic testing now that COVID case numbers have leveled off.
“Now that we’re post-COVID, people are jumping at the opportunity to make sure that they’re in good health,” she said.
This phenomenon isn’t specific to genetic screening, Yondorf said, but it is indicative of people being “open and willing and interested” in their health.
However, for Center City residents Charles Schnur and Brenna Stein, going through extensive genetics screenings illuminated troubles in the process that the couple hopes young, to-be parents won’t have to deal with in the future.
Both Schnur and Stein are heavy proponents of speaking about their experience doing genetic testing and believe it was the right call for them but recognize that, especially in COVID times, going to the doctor was a hassle. Moreover, COVID has revealed how people think about their own risk. When they received the results of their testing, Schnur and Stein had a one in 3,000 chance of their child having Tay-Sachs.
“Think about the way that people are thinking about COVID right now,” Stein said. “The way people are making decisions is based on fear or emotions, not statistics.”
Though services such as JScreen and Einstein Healthcare encourage or require a genetic counselor to discuss test results with a couple, the lack of plain language and risk analysis that is sometimes associated with genetic testing remains a concern, the couple believes.
“Medical terms sound scary; all these things sound scary,” Stein said. “We need to work harder on making this stuff less scary.”