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Center for Jewish Genetics blog

What We Inherited From Our Moms: Mother's Day Reflections from the Sarnoff Center Team

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We all inherit many qualities from our moms – some by nature and others through nurture. As Mother’s Day approaches, our staff is sharing a few things our moms passed on to us.   

  • I inherited my mother’s voice. People often think, when speaking to me over the phone, that I am my mother. My mom uses her voice powerfully. As a physician, she communicates with patients; as a volunteer, she canvasses for change; and as a synagogue lay leader, she welcomes others into her community. I like to think that even if I can’t always perceive it, I use my voice in some of the ways she uses hers. – Becca B., community health educator 

  • I inherited my mother’s compassion. My mother always cared for the people around her selflessly. Her ability to forgive and move forward is something I have always admired and try to emulate. I am able to look at others with compassion and grow as an empathetic person because of my mother. – Becca S., administrative assistant 

  • I inherited my mother’s laughter. I could pick out my mother’s distinct laugh in a noisy room. When she laughs she does so with her entire body; her shoulders move up and down and her mouth is open so wide that her eyes close. Making her laugh is one of life’s small joys. – Carol, program associate 

  • I inherited brown eyes from both of my parents, but it’s my mother whom I credit for my critical eye. A skeptic to her core, my mother ingrained in me the value of always examining statements closely, and even more closely when the source sounds confident. – Jason, executive director 

  • I inherited my mother’s love for shopping. We can’t walk away from a good deal! – Melissa, genetic counselor 

  • When I look into the mirror I see my mom’s reflection: I inherited her hair, her face and her mannerisms. However, best of all I inherited her optimism and caring for others. – Paula, associate VP, JUF 

  • I inherited many things from my mom, including a sense of Tikkun Olam. My mom lives this value, always pursuing social justice and trying to make the world a better place for others. I also have her need for organization and curly hair. – Sarah, assistant director 

Whether your mother is near or far or a blessed memory, take a few minutes this weekend to reflect on items, traits and conditions that have been passed down in your family. Maybe it’s a special recipe from grandma to mom to you or maybe you inherited your mother’s hair color. But also take note of any health conditions that may run in your family so you can share this information with your doctor. There’s no better way to honor mom than by protecting your health and the health of your family. 

Happy Mother’s Day to you and yours! 

Need tools to get started? Visit JewishGenetics.org or contact us to speak to our genetic counselor. 

Squint to read the DTC fine print

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By Jason Rothstein, MPH

The appeal of direct-to-consumer (DTC) genetic testing is undeniable, but comes with some caveats that may not apply to most of the other products and services sold under this model.

DTC is everywhere these days, and it’s not hard to see why. DTC companies promise higher-than-average quality for lower-than-average prices on a wide range of products like razor blades, pants, and shoes.

These models also extend to bigger ticket items like mattresses, and more personalized goods like eyeglasses. I’ve been extremely nearsighted since I was in elementary school, and now also need bifocals to read comfortably. Because I’m so dependent on my eyeglasses, I’m really picky about quality and willing to spend more money.

And yet, I’m typing this while gazing at the screen from behind my specs from a prominent DTC eyeglasses company whose name rhymes with Shmarby Shmarker. These companies and their pitches are highly appealing: better quality, more convenience, lower cost, and satisfaction guaranteed. What could go wrong?

Actually, a lot.

It’s easy to understand why someone might seek out DTC options for more complicated services as well. Today, if you’re interested in getting a genetic test for cancer risk, you can make an appointment with your doctor, then speak with a genetic counselor or specialist, then opt in to testing that may or may not be covered by insurance, and then go through another round of appointments to discuss your results. DTC tests offer much greater simplicity, but that simplicity comes at a significant sacrifice.

Recently, Heather Murphy wrote in the New York Times about a little-known aspect of the BRCA-related cancer risk testing offered by DTC genetics company, 23&Me. Their test only looks at three common BRCA mutations, but numerous other BRCA mutations also increase an individuals risk for breast, ovarian, and other cancers. Among women with any cancer-causing BRCA mutation, 23&Me’s test would miss nearly 90% of them from its positive results.

A negative result from this test might look reassuring, but in fact tells recipients very little about their potential for increased cancer risk. Worse, it might lead an individual to be less diligent with their own self-screening and with bringing concerns to their doctors.

23&Me doesn’t hide the limitations of its testing, and they aren’t trying to mislead. But you have to dive pretty deeply into their fine print – and have a somewhat sophisticated knowledge of genetic tests – to understand what this test does and does not tell you.

At the Sarnoff Center, we believe that genetic tests for cancer risk and reproductive risk should be paired with expert assistance, either through a qualified genetic counselor, or through a physician with specialist knowledge to explain and interpret genetic tests and results.

DTC models are great when you have the knowledge to evaluate what you’re getting. Is this razor blade as good as the one you buy at the drug store? Is this mattress as comfortable as the one you slept on before? Do these eyeglasses correct your vision comfortably and accurately? You can answer all those questions for yourself.

But when you’re seeking genetic information to help you understand your health risks, ask yourself honestly: Do I understand this test and its limitations? Will I understand the results? Would I benefit from expert assistance?

At the Sarnoff Center, our genetic counselor can help explain the differences among different kinds of genetic testing, and can help you identify resources to get the assistance you need. For all such inquiries, contact Melissa Ramos. We also recommend you take a moment to review our Board’s statement about DTC cancer testing.

(And for any opticians wishing to send hate mail, you can reach out to me directly.) 

'Keep the Change' and Autism Awareness

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By Carol Guzman

Warning: Light spoilers for "Keep the Change" ahead

Keep the Change is a refreshing romantic comedy that has authentic autistic representation with neuro-atypical actors showcasing their talent to create an impactful film that resonates with everyone. The picture embraces its unique characters and portrays them dealing with issues prevalent to all: love and self-acceptance.

In honor of National Autism Awareness Month, I would like to review Keep the Change, a movie featuring actors in a way no other movie has done before. Usually, neuro-typical actors are applauded for playing the few neuro-atypical roles available. Sean Penn was nominated for an Oscar for his portrayal of an intellectually disabled father in I Am Sam. However, the protagonists and supporting characters in Keep the Change are played by actors who are on the autism spectrum.

This love story takes place in the Manhattan JCC’s program, ‘Connections,’ for young adults with developmental and learning disabilities. The film centers around David Cohen, a wealthy aspiring filmmaker who is mandated to attend the young adult program after a confrontation with a police officer. He falls in love with the beautiful and vivacious Sarah Silverstein and tries to convince her that they are both better than their ‘Connections’ peers.

While Keep the Change is most certainly a touching romantic comedy, it also showcases David’s journey toward self-realization. Throughout the movie he considers the other autistic adults in ‘Connections’ ‘abnormal.’ His parents perpetuate his rationale, believing that his participation in the program is a blip in his summer plans. When they learn about Sarah, they worry that David will end up with someone he will have to take care of rather than dating someone who can care for him. He later admits that he is ‘weird’ and different, and he likes Sarah because she is ‘weird’ and different too.

Autism is a complex developmental disorder that affects a person’s ability to communicate and interact with others. About 1 in 59 children in the US have been identified with an autism spectrum disorder in all racial, ethnic and socioeconomic groups. While there are no clear-cut biological markers of autism, many studies suggest that genes and environmental influences act together to affect development that can lead to autism spectrum disorder. Fragile X syndrome, passed from unaffected mothers to their male children, is the most commonly known genetic cause of autism and other intellectual disabilities. In some cases, autism may run in the family; however, even if a family has identical twins, there is still a chance that one twin will have autism while the other will not. 

My hope is that National Autism Awareness Month inspires people to learn more about autism spectrum disorder. While there is nothing uniquely Jewish about autism, we must identify the barriers individuals with disabilities and their families face within the Jewish community and around the world. This April, may we seek out ways to foster a more inclusive community this month and every day. 

In an Age of Information Overload, Carrier Screening Provides Peace of Mind

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By Sarah Goldberg 

As genetic tests allow us to know more about our makeup than ever before, sorting out just how much information we want about ourselves and our families can feel complicated – and perhaps nowhere is the question more pertinent than when having a baby.

What do we want to know about a child’s risk of disease? Most of us would agree that we would avoid passing on a fatal childhood illness, such as Tay-Sachs, if we could. What about disorders that are serious but not life-threatening? The answer of course will vary person by person. But where people are in the family planning process can also make a difference. Seeking out information as early as possible – ideally prior to conception – can help parents-to-be feel empowered rather than anxious.

A recent NPR story shared one couple’s experience with expanded carrier screening during pregnancy to explore whether more information is helpful or harmful. Test results indicated their baby could inherit spinal muscular atrophy, leaving them worried and in search of a genetic counselor. Their daughter was ultimately born healthy, but the experience was an added stressor. Fortunately, there are ways to improve the screening experience and reduce the likelihood of finding yourself in a similar situation.

First, consider preconception carrier screening. This allows you to talk about risk and make an informed decision while it’s still hypothetical. Most families will receive information that helps them worry less (97% of babies born healthy, as the NPR article points out). For couples who learn they carry the same recessive disorder, preconception screening provides more options for having a healthy baby. Even those who don’t choose to alter their approach to family planning can benefit from this knowledge by preparing for early intervention.

Second, ensure you have access to expertise. Consider screening through a doctor’s office or community program – such as the one offered by the Norton & Elaine Sarnoff Center for Jewish Genetics – that includes genetic counseling as part of the pre- and post-screening process. Before the test, education can help you understand what the test screens for and the potential outcomes. Afterward, receiving results from a genetic counselor or doctor with expertise in genetics ensures a thorough explanation and an opportunity to ask questions.

Genetic counselors can also help you understand risk, which often poses a challenge. Beyond understanding numbers and statistics, it’s hard to take our feelings out of the equation and focus on facts with something that feels so personal, like our health and the health of families. Genetic counselors are trained in both medical genetics and counseling to empower you with information and provide emotional support.

The journey to become a parent is exciting – and also filled with many unknowns. Take away one by getting screened earlier and with guidance from a genetic counselor.

To learn more about the Sarnoff Center’s affordable, accessible carrier screening program or to speak with a genetic counselor, visit JewishGenetics.org/cjg/get-screened or contact us at GeneticScreening@juf.org

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Affordable, Accessible Genetic Screening in Illinois

Our affordable, accessible carrier screening program uses advanced technology to provide comprehensive screening for Jewish and interfaith couples. Visit our Get Screened page to learn more and register.

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Do You Know What's In Your Genes?

What is the most valuable gift you can give to your family? The gift of good health! There are many health conditions that run in families. Knowing your family health history can alert you to the potential risk for a variety of genetic disorders . Talk to your relatives for warning signs and assess your risk for hereditary cancers.

Did you know: Ashkenazi Jews are 10 TIMES more likely to have BRCA mutations, which significantly increases lifetime risks for hereditary cancers, so what does this heightened risk mean for you? Click here to learn more .