Yeshiva University News » Program for Jewish Genetic Health

Chani Wiesman Berliant on the Need for Genetic Education and Testing

In my role as genetic counselor, I meet with men, women and families who have personal or family histories of cancer. I take a detailed medical and family history, assess the chance for an hereditary risk for cancer, and recommend appropriate genetic testing. Genetic testing can help identify what that “hereditary factor” is. When the results come back, I interpret them in the context of the family history and help make screening and management recommendations.

Chani Wiesman Berliant

Chani Wiesman Berliant is a genetic counselor at YU’s Program for Jewish Genetic Health

Inevitably, the following statement would come up in discussion:

“…and if you carry one of these BRCA mutations, it means that there’s a 50/50 chance that you could have passed it on to your kids…” Read the rest of this entry…

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As We Celebrate Tu B’Shevat, A Call for Rabbis and Educators to Stay Informed About Jewish Genetic Diseases

“Thus was he [the cedar tree] beautiful in his greatness, in the length of his branches; for his roots were upon abundant waters.”– Ezekiel 31:7

Tu B’Shevat, the New Year of the Trees, is quickly approaching. Now is when the earliest-blooming trees in the Land of Israel wake up from their winter slumber and begin a new cycle of bearing fruit. The roots are prepared to do their job, to anchor the tree in place and to extract nutrients from the soil so that the tree can be strong and healthy.

Estie Rose is a genetic counselor with YU’s Program for Jewish Genetic Health.

As a genetic counselor who advocates for pre-conception genetic testing, I take the roots-to-tree metaphor very seriously. I believe that in order to sustain a healthy community, the roots of the community have the responsibility of relaying just how important genetic testing is.

Carrier screening for autosomal recessive diseases that are common in the Ashkenazi Jewish population is widely available and has been recommended by professional organizations to be completed prior to conception or in early pregnancy. While the tests for these diseases are generally accessible, the uptake has been found to be disproportionately low in comparison to the number of Ashkenazi Jews who are of childbearing age.

One suggestion for increasing awareness of the availability and importance of pre-conception genetic screening has been to train rabbis. Read the rest of this entry…

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Program for Jewish Genetic Health and YU Connects Present November 6 Discussion on Issues Related to Family Health and Genetics

UPDATE: Due, to the Hurricane, this event has been postponed.

The Program for Jewish Genetic Health, a joint initiative between Yeshiva University and Albert Einstein College of Medicine, and YUConnects, the social and matchmaking organization of the Center for the Jewish Future, will present “To Tell or Not to Tell: Issues Related to Family Health and Genetics,” at Congregation Keter Torah in Teaneck, NJ on Tuesday, November 6 at 8 p.m. The event is free and open to the public and is co-sponsored by Congregation Keter Torah, Congregation Beth Abraham and the Rabbinical Council of Bergen County.

Read the rest of this entry…

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As We Engage in Mirth of Tu b’Av, Remember the Importance of Genetic Testing

As Jews, we don’t have many light-hearted holidays, but this week we’ll celebrate one of them, Tu b’Av. Casually known as the Jewish Valentine’s Day, Tu b’Av is the counterbalance to the most difficult of all our holidays, Tisha b’Av, which just passed.

Estie Rose '07S is a genetic counselor with YU's Program for Jewish Genetic Health

While we fast and remember all of our hardships and trials during Tisha b’Av, this week, beginning at sunset Thursday, we will engage in mirth, and celebrate love and joy. Many will wed and many, according to Jewish lore, will meet their matches on Tu b’Av.

But as with all Jewish holidays, this one still must come with a warning, albeit one deeply rooted in modernity.

As young Jews meet their mates and consider marriage, they should be told about the importance of undergoing carrier screening for Jewish genetic diseases, and act on it. Read the rest of this entry…

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Yeshiva University Program for Jewish Genetic Health Launches Blog

How is the field of genetics going to change the world of medicine? What kinds of situations do genetic counselors face on a daily basis? What kinds of ethical concerns should be taken into consideration before exploring the “slippery slope” of genetic engineering? What is halakhically permissible under Jewish law?

These are just a few of the questions that will be answered in The Gene Scenea new blog from The Program for Jewish Genetic Health, a joint initiative between Yeshiva University and the Albert Einstein College of Medicine. Read the rest of this entry…

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Jewish Genetic Disease Carrier Screening Coming to the Wilf and Beren Campuses

The Program for Jewish Genetic Health of Yeshiva University and Albert Einstein College of Medicine will be sponsoring Jewish Genetic Disease carrier screenings for YU students on Sunday, April 22, from 11 am to 3 pm on the Wilf campus, and Monday evening, April 30 from 4 to 8 pm on the Israel Henry Beren campus.

Both screening sessions are available exclusively to YU students and require pre-registration and a $250 fee. Registration is limited to 100 students per session, on a first-come, first served basis. A limited number of appointments are still available and pre-payment is mandatory. To register for the Wilf campus screening, visit http://yu.convio.net/Wilfscreening.  To register for the Israel Henry Beren campus screening, visit http://yu.convio.net/sternscreening.

The Program for Jewish Genetic Health provides young Ashkenazi Jewish singles and couples with accessible and affordable options for “open” genetic testing that will identify “carriers”—individuals who themselves are not affected with the specific disorders but whose offspring are at risk if these carriers marry individuals who also are carriers for the same disorders. Approximately 1 in 4 Ashkenazi Jews are carriers for at least one disorder, which include Tay-Sachs disease, familial dysautonomia and Gaucher disease.

For the April 22 and April 30 campus screenings, the Program for Jewish Genetic Health will bring mobile medical services to YU. Screenings will involve genetic counseling sessions, informed consent and blood draws. Generous philanthropic subsidies are allowing the Program to charge participants only $250 for a panel of tests that will screen for 18 Jewish Genetic diseases, a fraction of what this testing would cost if it were conducted through commercial laboratories. In situations of extreme financial hardship, the University will review each case individually to determine the suitability of additional subsidies to ensure that no student is turned away.

“Jewish genetic disease carrier screening allows individuals to take ownership of their own genetic health status and empowers them early on with the information they will need for building healthy families,” said Bruce Lander, executive director of the Program for Jewish Genetic Health. “Thanks to our philanthropic partners we are able to provide a large number of YU students with genetic screening at a very affordable rate.”

The campus screenings follow informational sessions recently held in conjunction with YU’s Student Medical Ethics Society. “The Most Important Test You’ll Ever Take: A Panel on Genetic Screening” featured Rabbi Mordechai Willig speaking alongside a genetic counselor and a mother with an affected child, about the difference between “open” and “closed” testing, the number of diseases for which testing will be offered by the Program, options for carrier individuals and couples, and halachic considerations.

Click here for Frequently Asked Questions about the campus screenings or email jewishgenetics@yu.edu with any additional questions.

The Program for Jewish Genetic Health was established in 2011 to ensure the well-being of families today and to provide a lasting gift of health to the future. Our vision is 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. For more information, visit www.yu.edu/genetichealth.

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Rabbinic Symposium Presented by Center for the Jewish Future Raises Awareness of Genetic Health Issues

Twenty-five percent of Ashkenazim are carriers for at least one genetic disorder—“which means that it’s not a stigma; it’s a community problem,” said Dr. Nicole Schreiber-Agus at a rabbinic symposium on genetics hosted by Yeshiva University’s Center for the Jewish Future (CJF) on Monday, December 5. “There are many options for having a healthy family,” said Agus, noting that there are also specifically Sephardic disorders.

Rabbi Lookstein addresses the symposium crowd. Rabbi Willig looks on.

More than 40 rabbis attended the symposium titled “Guiding Your Congregants through the Lifecycle: Halachic, Scientific, Clinical, Pastoral and Counseling Approaches to Genetic Issues.” The goal of the program was to empower rabbis to effectively and sensitively support congregants dealing with genetic health challenges. “The patient will always remember what was said by the doctor or by the rabbi,” said Rabbi Kenneth Brander, David Mitzner Dean of the CJF.

The symposium drew attention to YU’s new Program for Jewish Genetic Health (PJGH), a unique initiative that integrates the Jewish communal responsibility of YU with the clinical services, genetic education and biomedical advances of its medical school, Albert Einstein College of Medicine. The program, established to serve as a centralized resource for everything related to Jewish genetic health issues, provides education, awareness and support to communities and clergy, as well as enables all individuals to receive carrier testing for a host of Jewish genetic disorders, regardless of their financial situation. If one’s health insurance will not cover the cost of genetic testing, the PJGH will.

Agus, scientific director and program liaison of the PJGH, emphasized that couples should undergo screening for genetic diseases before each new pregnancy. “There are always more mutations being tested,” she said. “It is a rolling issue.”

Rabbi Haskel Lookstein, spiritual leader of Manhattan’s Kehilath Jeshurun, said that he raises the issue of genetic testing with all couples he meets for pre-marital counseling. However, Lookstein believes that so-called genetic incompatibility should not be a dating, engagement or marriage deal-breaker. “In my opinion, the results of that test should have absolutely no bearing on continuing that relationship,” he said.

“I think it’s hard enough today for singles to find the proper mate with whom to build a relationship and a marriage,” added Lookstein. “…You have to look for certain fundamental qualities… but I don’t think genetics should play a role in the decision.”

Rabbi Mordechai Willig, rosh reshiva at YU-affiliated Rabbi Isaac Elchanan Theological Seminary (RIETS) disagreed; he believes that if a couple discovers their genetic incompatibility before they are married, they should not continue the relationship. However, if the couple is already married, they should not get divorced over the issue.

During a panel session, several attendees voiced questions they had received from congregants regarding breaking various Shabbat laws to receive in vitro fertilization (IVF) treatment, one available option for “carrier couples” seeking to raise healthy families. “On Shabbat, many things are allowed—more than you’d expect,” said Willig in response to a question. Because each case is different, he declined to give a blanket ruling on the issue.

The symposium also featured a moving presentation by Robin Fiddle Posnack, the mother of a child with familial dysautonomia (FD), one of the more prevalent Ashkenazic genetic disorders. When Posnack was pregnant with her first child in 2000, she had tested negative for the handful of Jewish genetic diseases that individuals were being screened for. When she became pregnant again five years later, her physician did not have her screened for the additional diseases that tests had been developed for since her last pregnancy. She then gave birth to a child with FD, underscoring Agus’s insistence that women be tested before each pregnancy.

Visit YU’s Program for Jewish Genetic Health online to learn more.

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Real Estate Icon Michael Stoler’s Gift Helps Ensure Jewish Genetic Health

Michael Stoler is a New York real estate magnate and managing director of Madison Realty; president of New York Real Estate TV and host of the television shows Building New York: New York Stories and The Stoler Report; real estate commentator for 1010 WINS and real estate columnist for a variety of publications.

Despite his leading presence and professional interests in the real estate industry, many of Stoler’s philanthropic interests lie in a variety of health-related organizations and he has served on the boards of NYU Langone Medical Center, Helene Fuld College of Nursing, and American Friends of Rambam Medical Center, among others. He is also a former chairman and current honorary chairman of the Men’s Division Executive Board at YU’s Albert Einstein College of Medicine.

Most notably, he co-founded the Foundation for Medical Evaluation and Early Detection in November 2001. “I spoke to a few of my friends, and we decided to come on board as benefactors and pool resources to provide funding for all types of medical screenings,” said Stoler.

The Foundation’s primary mission is to make screenings for various diseases – such as stroke, seven forms of cancer including prostate cancer, lung cancer, chronic kidney disease and osteoporosis – available to the general public free of cost in the hope that early detection can save lives. The Foundation works with leading academic and medical institutions to participate in these free screenings.

“We have no overhead and no operating expenses – our mission is simply to obtain funding to negotiate testing fees with healthcare institutions to help more people get tested,” Stoler said.

Stoler, who serves as president and CEO of the Foundation, became familiar with Jewish genetic diseases when a friend of his confided in him that he was raising a young child suffering from Mucolipidosis Type IV (ML4), a debilitating and rare Jewish genetic disease that has left the child without the ability to walk, talk, and eventually, see. His friend told Stoler that he and his wife were tested in college by an organization that was limited in its scope of testing for genetic diseases. Unfortunately, prior to their marriage, neither his friend nor his wife were ever advised to undergo further Jewish genetic testing despite the fact that additional tests had been made available.

“I committed right then and there to working toward ensuring that no couple ever faces the tragedy and hardship my friend is dealing with on a daily basis,” said Stoler.

Through his foundation, Stoler has pledged a gift of at least $60,000 to Yeshiva University’s Program for Jewish Genetic Health; the gift is being applied toward providing carrier testing for ML4 and other Jewish genetic diseases to uninsured and underinsured individuals, some of whom have been referred to the program by Stoler himself. Read full article at News and Views at YU

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The Forward Interviews Susan Gross, Founder and Director of YU’s Program for Jewish Genetic Health

Yeshiva University officially launched its new Program for Jewish Genetic Health with a ribbon-cutting ceremony in February. But the program’s roots go back much further than that.

Dr. Susan Gross

Dr. Susan Gross, founder and director of YU's Program for Jewish Genetic Health

Inspired by Yeshiva’s Tay-Sachs community screens of the 1970s, Dr. Susan Gross, medical director of the human genetics laboratory at the Jacobi Medical Center, launched a pilot effort five years ago to provide New York’s Jewish community with accessible and affordable testing for recessive genetic diseases.

The effort was such a success, with thousands of young couples tested at synagogues and universities across New York City and around the country, that last year Gross formalized a relationship between Yeshiva University and its affiliated Albert Einstein College of Medicine—and the program was born.

Gross didn’t want to stop with just prenatal screening, however. At its core, the program has two other pillars: community and rabbinical awareness, and providing support for the Jewish community around a multitude of genetic health issues. Gross spoke with the Forward about how the new program can help Jews with genetic health concerns.

What does it really mean to talk about “Jewish genetic health?”

It may just be words, but there’s something extremely positive about using the word “health.” We didn’t find it in the name of most Jewish genetic programs out there, although it is the underpinning of everything they do. Rather, we found a lot of emphasis on disease and disorder. But there are two aspects to health: One is preventative medicine; the other is therapies and cures—and it’s absolutely both of those that we’re after. Hopefully, the word “health” will lend a sense of empowerment to the Jewish community.

Read full article at The Jewish Daily Forward…

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Ribbon Cutting for the Program for Jewish Genetic Health on Feb. 9

The Program for Jewish Genetic Health of Yeshiva University will hold a ribbon cutting ceremony on Wednesday, February 9, at 4 p.m., in the Michael F. Price Center for Genetic and Translational Medicine at YU’s Albert Einstein College of Medicine.

The new program uniquely integrates Jewish communal responsibility, genetic education, and biomedical advances through its relationship with Einstein and its affiliates. At its core are three main objectives—to provide accessible and affordable options for carrier testing for Jewish genetic diseases; to increase awareness and disseminate timely information regarding genetic health to lay and professional sectors of the Jewish community; and to establish a centralized resource and support center for Jewish genetic health and associated concerns.

“The program represents an attempt to develop a centralized resource for the Jewish community and its future generations to deal with Jewish genetic health concerns confronting individuals and families from before birth to old age,” said Nicole Schreiber-Agus, scientific director of the program. “We view the community as an active partner in our mission. We are here to serve all of its constituents and are prepared to evolve and adapt as community needs grow and change.”

The Program for Jewish Genetic Health follows in Einstein’s history as one of the central institutions to have partnered with the Jewish community to eradicate Tay-Sachs disease. With the explosion of genetic knowledge and technology over the past decades, there are now many other issues that require the same focus and attention. The program builds on a pilot effort of the Human Genetics Laboratory of Jacobi Medical Center, wherein carrier testing for Jewish genetic diseases was performed for more than 4,000 individuals in subsidized screening programs nationwide over the past several years. The laboratory at Jacobi will continue to serve as the program’s foundation for testing and research, and will partner with other laboratory programs as well. Working with the Reproductive Genetics Division at Montefiore Medical Center, the program will now have its own community screening program that services the New York area. The education and resource arms of the program will also benefit from Yeshiva University’s efforts in supporting local and global Jewish communities.

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