Genetic Testing: It’s Not Just About Tay-Sachs
“What do you want to do when you grow up?” I abhorred this question. I had no idea what I wanted to do. I am interested in a lot of things: biology, history, musical theatre, media, cooking, and more! How was I going to choose only one thing to do for the rest of my life? I am told this is common for students, and students are given common advice in response: intern. By doing various internships in hospitals, a cancer center, my theatre group, and at a popular YouTube channel, I figured out what I liked and disliked and what I wanted to continue to pursue.
I have always been interested in women’s health, but having both a brother and brother in-law in medical school, I have had enough exposure to know that process isn’t for me. My sister, Elisheva, thought genetic counseling might be a good fit for me. So, of course, my next step was to get an internship.
This past summer, I interned at the Montefiore Genetic Counseling office. On the very first day, I learned that genetic counseling is relevant to the world population far beyond what I’d previously been exposed to: Ashkenazi Jews and our infamous Tay-Sachs. Over the course of my internship, I sat in on countless pre-natal and oncology counseling sessions as the genetic counselors helped the patients draw out their family trees and figure out what the next best steps would be in their situations.
On October 1st, I volunteered for the first-time for JScreen at the 92nd St. Y Fair. At the booth, I encountered a young couple- maybe in their late 20s, noticeably Jewish- who seemed interested in JScreen. I explained to them that JScreen is a nonprofit organization dedicated to preventing Jewish genetic diseases through education, genetic testing, and genetic counseling. As I was explaining this, I could see both their faces showing not only interest, but a sense of relief. Unlike most Orthodox Jews that seek out some sort of genetic testing prior to getting engaged, this couple had not previously thought of genetic counseling as something they needed to check off their “pre-marriage” checklist. As they filled out the basic information to receive their Spit Kit, I felt rewarded that I had just encouraged two people to plan for their future healthy family. They couldn’t believe the process was so simple, convenient, and at such a low price that they left the booth smiling…and with some pretty dope JScreen swag too.
Later on, while feeling great about my work and contributions through my volunteering, a man asked me a question that completely changed my mood. He thought it was an unassuming question, but it was very alarming. He asked me, “have you done this testing on yourself?” I was caught off guard and embarrassed. At that point, I had not done genetic testing. I was promoting a subject that I care deeply for and was advocating for others to do too-but I hadn’t done myself. I felt like a fraud. I responded to the man “No, not yet…but I will soon.” I ordered my Spit Kit from JScreen that day.
The kit arrived about a week later and I got my results soon after mailing it back. Despite not having been seriously dating someone/ I was not “in the parsha,” / any of that shtuss, I feel it was incumbent upon me that while I am advocating for people to be aware of what genetic diseases they may carry, I should do the same whether I am in a “serious” relationship or not. As a person who has completed the testing, I can now advocate for it and give testimonial too.
Knowledge is power, and knowing about your genetic baggage will help you prepare for your future and feel empowered to be proactive about your health. I am grateful to this fellow for holding up a mirror to me that day and unintentionally encouraging me to take the plunge. Now when people ask me, “Talia, TKup, T, what do you want to be when you grow up?” I confidently respond, “A Genetic Counselor!”