ASU student wants Jews in Greater Phoenix to be curious about their genes

Daniel Gottlieb, a graduate student in Arizona State University’s genetic counseling program, hopes Ashkenazi Jews in Greater Phoenix will take the time to fill out his carefully crafted needs assessment survey. He hopes to ascertain how much knowledge people already have about genetics and whether they intend to act on that information.

I want to raise awareness in our community so they know what’s going on and hopefully will be able to make medical choices that are right for them, she told Jewish News.

Daniel Gottlieb

ASU student Daniel Gottlieb created a survey to help educate Great Phoenix Jews about their genes.

Gottlieb’s interest in genetics was first sparked in middle school biology but was cemented in high school when his mother discovered she had a mutation in breast cancer gene 2 (BRCA2). All have the BRCA1 and BRCA2 genes, tumor suppressors that help fight cancer. But a mutation in one of these genes prevents them from functioning normally. According to the Center for Disease Control, one in 40 Ashkenazi Jewish women, like Gottlieb’s mom, has a BRCA gene mutation.

Gottlieb said his mother spent about a year after the discovery mulling over what to do. She speculated that a general stigma that not having her breasts makes someone less of a woman may have made her reluctant to remove them. But with the help of a support group, she finally decided to have a preventative double mastectomy before the cancer developed.

She underwent the surgery in 2014, the year after actress Angelina Jolie explained in a New York Times op-ed that she opted for a double mastectomy after discovering her BRCA1 gene was faulty. Jolie’s decision shocked many at the time, but it led to more people testing for genetic mutations, according to an article published three years later in the British Medical Journal. On the other hand, according to an article published in another medical journal, Genetics in Medicine, she hasn’t moved the needle far on public understanding of the relationship between genetics and breast and ovarian cancer risk.

Gottlieb plans to spend his career educating people about the importance of genetic testing, how to access it, and what to do with the results. This survey, his main project, is part of it. By asking people about their gender, education levels and religious affiliations, as well as specific questions about their familiarity with different aspects of genetics and testing, he hopes he can spot trends that will help him develop specific educational tools for different populations.

Anyone over the age of 18 who lives in Greater Phoenix at least six months of the year and has at least one Ashkenazi Jewish parent can take the survey through the end of September. As of June 26, at least 100 people have already completed it. But since he’s looking at general trends, the more responses I get, the more accurate the trends will be, Gottlieb said.

He wants to reassure anyone who hesitates to fill out the survey that there are no wrong answers: any answer is a good answer, he said.

Gottlieb devoted much of his undergraduate career at the University of Connecticut to the study of cancer. After graduation, he got a job in a lab working on cancer samples and looking for mutations in cancer to help with prognosis, diagnosis and treatment plans, he said.

His work there, coupled with his family history, brought him into the field of genetic counseling, where he will help individuals and families with, or at risk of, genetic disorders understand its medical and psychological implications.

I want to be the person my family never had, she said. Her mother went to her OB-GYN instead of a genetics professional and many doctors are not trained to interpret genetic test results, she said.

I want to be someone who helps explain the process, what tests to order based on family history, what the next steps are, what kind of doctors should be seen. As a genetic counselor, I will be trained to deal with the emotional side of things.

He recently discovered that he also has a BRCA2 mutation. This puts him at a higher risk of melanoma, prostate, pancreatic and breast cancer, giving him even more self-interest in the job.

What he doesn’t want is for people to think that just because they’re Ashkenazi, they’re going to have a genetic problem. After all, every human population has the possibility of some genetic disease.

He wants people to be informed about all of their health prospects, and knowing the risks can help people get the tests right and go from there. BRCA mutations may have gotten the most attention thanks to Jolie’s stardom, but there are other genetic issues that Ashkenazi Jews need to consider.

For example, TaySachs disease is a genetic disorder that destroys nerve cells in the brain and spinal cord, affecting approximately 1 in 3,600 Ashkenazi Jews at birth. Knowing whether one or both parents-to-be are carriers can help them make decisions.

There are medical options to prevent heartbreak and hardship which is why this knowledge is so important. Bringing awareness is important because of the preventative aspect in medicine, Gottlieb said.

Katherine Hunt Brendish, Gottliebs program director and project researcher at ASU, put him in touch with the Minkoff Center for Jewish Genetics, which raises awareness of genetics in the Jewish community and provides resources and referrals to genetic counseling. Minkoff promoted the Gottliebs poll given the alignment of their interests.

Wendy Carriere, executive director of the Minkoff Centers, serves on the advisory board of genetic counseling programs at ASU. Graduate students will receive credit through the Minkoff Center by shadowing certified genetic counselors during counseling sessions, analyzing the centers’ screening records from the past 18 years, and assisting in answering community questions.

Daniel is taking it one step further with his project and survey. We hope his interest in the Phoenix Jewish Community will help the Center reach more individuals and families who may want genetic counseling or testing, Carriere told Jewish News.

Gottlieb is excited to graduate into a world that has made tremendous advances in genetics over the past 50 years, and especially after the Human Genome Project was able to generate the first human genome sequence in 2003.

The advances that have been made in genetics will lead to better health outcomes for more people, he said. JN extension

To complete the survey, click here.

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