Pioneering Pittsburgh genetics program

Pioneering Pittsburgh genetics program

“We’ve made it a foundation priority,” said Jewish Healthcare Foundation president and CEO Karen Wolk Feinstein, “to raise awareness of the value of genetic screening.” And with that, the JHF has created an amazing opportunity for the Jewish community in Pittsburgh and hopefully a model for communities around the country.

Feinstein is referring to the announced plans to fund the development of a new curriculum for Jewish middle and high school students on the topic of Jewish genetics and vaccines called “Incorporating Scientific Discovery in Health and Lifestyle Decision-Making.” Along with a $45,000 grant, JHF has picked two great resources for Jewish and medical knowledge in Dr. Nina Butler and Dr. Jonathan Weinkle, who are charged with the task of working with area day schools to create a robust curriculum around the topic of Jewish genetics.

“Dr. Butler and Dr. Weinkle balance clinical and educational expertise with strong grounding in Jewish tradition and knowledge of our community,” said Feinstein, and right she is.

As Weinkle told The Jewish Chronicle recently: “It sounds like the schools are excited about it.” He explained that “science and Judaics will be woven together into an integrated curriculum … noting that once developed it could see national appeal.” Along with raising awareness of the importance of screening for Jewish genetic diseases, the new curriculum would be a gift to other communities because, regardless of religious practice or even level of Jewish knowledge, one in four Jews is a carrier for one of a possible 19 genetic diseases.

It would benefit the next generation and this one to standardize the practice of early screening for these genetic mutations. The curriculum therefore will provide teachers with a platform to educate their students about the two aspects of this issue: basic genetics and Jewish history. The goal is to get young Jewish Pittsburghers to understand why they, as opposed to other ethnic groups, are more likely to be carriers for certain diseases.

“How many of us actually know our own family’s medical history?” Butler asked. “Everyone has at least one grandparent that they were told died of old age. It’s still taboo. We don’t know what our grandparents died of, or why. We need to be talking about it.”

What each of our area Jewish schools should be talking about is the history of how Jews came to have a specific genetic profile, how our sages dealt with the question of health and procreation and why getting a Jewish genetics panel should be standard operating procedure for every Jewish person. Many in the Orthodox community are already doing this, but such screening is less common among other denominations and the unaffiliated. And while screening may be more common among the Orthodox, there isn’t a specific curriculum devoted to the topic. Now there can be both. “I haven’t seen anything in other day schools [throughout the country] with anything like this,” Weinkle said.

Butler and the JHF both credit Dodie Roskies, the director of the Pittsburgh Victor Center (full disclosure: she’s my cousin), with urging greater attention to Jewish genetics and screening. Roskies “started the discussion in the most constructive way by talking to insurers to cover the testing,” explained Butler. Roskies not only pushed insurers, but she’s worked hard to promote the center’s mission of educating “the Pittsburgh community about Ashkenazi Jewish genetic diseases and ensur[ing] access to screening for Jewish genetic diseases in order to provide individuals with the greatest number of options.” Those screenings have been offered to area college students for the past few years. Now, Butler is committed to “taking the ball and running with it for the kids in the community.”

What makes this project so special is the fact that it was generated from individual members of the community working together with local organizations to create an entirely new learning opportunity for the benefit of the whole community. As Butler said, “We have to cooperate to raise community awareness and pass on scientific advances through our Jewish lens to benefit our endogamous community. It’s about improving genetic health in the whole community.” Whether this project succeeds and spreads beyond Pittsburgh remains to be seen, but it is important to take time to recognize the good work of local residents who are working hard so that we should all grow and thrive.

Abby W. Schachter, a Pittsburgh resident, is senior fellow at the Independent Women’s Forum and writes regularly for the Pittsburgh Tribune Review.

Follow her on Twitter @abbyschachter.