There are two basic kinds of talks about genetic diseases, Dr. Nicole Schrieber-Agus said.
Dr. Schrieber-Agus is the director of the program for Jewish genetic health at the Albert Einstein College of Medicine/Montefiore Medical Center in the Bronx and an assistant professor of genetics, obstetrics and gynecology, and women’s health at Einstein, and she will give a talk that fits into neither of those two categories in Teaneck on Saturday night. (See the box for more information.)
The first, she said, is the science-fiction talk, the one about cutting-edge research and wildly forward-thinking goals. Those talks are “fascinating, and many people with scientific minds, including me, love it.” But the second, while less compelling, and at times actively discomforting, is perhaps more important. It’s the practical talk, the one where people are provided with explanations and advice.
She plans on basing her Saturday night talk on that second model, but adding a new element. It’s called “Protecting Jewish Genetic Health: Do I Practice What I Preach?” and in it Dr. Schrieber-Agus plans to ask herself that question, in public, and answer herself.
“This is my tenth year in this field, and a lot has changed,” she said. “Things move very fast in genetics.” More discoveries lead to more choices.
“You always have to consider many facets when you are considering genetics,” Dr. Schrieber-Agus said. “It’s not just one person. It’s a family. You have to consider religious and ethical and communal aspects; people have to make very personal decisions.” Not only is each person’s situation different, but situations change over time, generally in unpredictable ways, and science changes as well. All those unpredictable variables — which also include preconceptions, outdated information, fear of stigma, the desire for privacy, and the general fear of cancer, illness, hospitals, and death — makes decisions no less necessary but often harder.
“The two major genetics realms that I will be discussing on Saturday night are preconception carrier testing — which is for diseases like Tay Sachs, but there are now dozens more as well — and also the risk of hereditary cancer, which is testing for genes like BRCA,” Dr. Schrieber-Agus said.
“I also will cover a little bit of population genetics — how there are some diseases and mutations that are more common in Jewish populations. I will also talk a bit about ways in which we need to improve as a community. It will be a little bit of preaching — of mussar — about what we are not doing right. We have to be more aware of issues of inclusion, and of fighting stigma.”
This has not been an easy talk to prepare, Dr. Schrieber-Agus said, although the process of composing has been very good for her. It will take courage. “I had to decide not only what I feel comfortable in disclosing, but also how to talk to an audience that might be very mixed.
“It might be mixed in that people might be at different levels of religious observance, or in terms of their history. You never know who is in the audience. You never know what people might have gone through, or what they might be going through now.”
Sensitivity matters, and so does information, Dr. Schrieber-Agus says. She plans to provide both.