Genetic Counseling: Up Close and Personal

2 May

I have always found my job as a genetic counselor to be rewarding. Most of my patients come to see me in a state of anxiety and stress, and after talking with them and doing whatever genetic testing we agree upon, most of the time I have good news to tell them. On those rare occasions when things do not go as hoped, I try to be there for my patients in whichever ways they want me to be.

Just 2 years after the start of my career, I was offered an opportunity that I could not turn down—not only to continue seeing patients, but also to serve as the genetic counselor for Yeshiva University’s up-and-coming Program for Jewish Genetic Health (PJGH). The PJGH is based in New York City and was established with the vision that nobody in the Jewish community facing a genetic health issue should be deprived of proper care due to lack of awareness, financial barriers, or difficulty in navigating the healthcare system. My roles within the PJGH would be to develop educational opportunities for the Jewish community and its leaders, and to see Jewish patients for genetic counseling and testing in the most affordable and accessible ways. As a Yeshiva graduate and Orthodox Jew, adding this ‘community’ component to my job has been a dream — I get to do what I love doing as a genetic counselor, and I also get to do it within my own community.

But, there are some challenges. Many patients come to me before considering a pregnancy, and as you can imagine, many of them are in their 20s and 30s. I myself am in my mid-20s, so many of my patients are my peers — friends, friends of friends, people I know from college or synagogue etc.  The New York Jewish community is in fact very interconnected which makes genetic counseling a bit uncomfortable for the patient.

During a genetic counseling session, a counselor will ask basic questions about who is who in the family and will construct a medical family tree. Counselors are trained to ask about each individual’s medical history and when things get complicated, they often ask follow up questions to delve more into the condition. We are not doing this to be nosy, but rather to assess whether the condition is hereditary and if so, what is the risk for the patient to be affected or to have a child with that same condition.

Some ‘intrusive’ questions that are asked in a prenatal or cancer genetic counseling session include: Are you currently taking oral contraceptives? How old were you when you started menopause? Have you had any miscarriages? Does your brother have a formal diagnosis for his autism? Would you be interested in being referred to a therapist or support group?

I find that my patients outside of PJGH are more at ease discussing medical issues with me than my PJGH ones. It’s easier to open up to a complete stranger than to a personal acquaintance, which makes sense to me. If I know in advance that something uncomfortable may come up, I will ask a fellow genetic counselor to see the patient instead of me. It’s impossible to always know in advance what will come up in a session. On days when situations like this arise, I find myself doubting whether I am the right liaison between genetics and my community. But in the interest of the patient and to do my job as thoroughly as possible, I cannot stop asking questions just because I sense that my patient is not comfortable.

Before I made the decision to take on the PJGH part of my job, I was on the way back from a successful screening event at the Jewish Theological Seminary with one of the founders of the PJGH. We were stuck in terrible New York traffic and we had a lot of time to chat. She told me the Jewish saying in Hebrew: “Kol yisroel areivim ze la’ze,” which roughly translates into, “We are all responsible for one another.” And how right she was. I formally accepted the position at PJGH the very next day and I never doubted it for a minute. How lucky I am that I get to use the skills I learned in school to help my own people — no matter how awkward it may get from time to time!

Esther D. Rose, GCEstie Rose received her undergraduate degree in Biology in 2007 from Stern College. She received her Masters in Genetic Counseling in 2009 from the Mount Sinai School of Medicine. Estie currently works as a genetic counselor and Instructor at Montefiore Medical Center and Einstein, where she specializes in reproductive and cancer genetics. Within the Program for Jewish Genetic Health, she is involved in community outreach and education, and screening events.

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