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How Can We Help People Learn About Jewish Genetic Health?

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Needs-Assessment

By Becca Bakal, MPH

Welcome to the third installment of our blog post series about the Norton & Elaine Sarnoff Center for Jewish Genetics Community Needs Assessment! Last time, I shared some factors that influence understanding of Jewish genetic health.

This time, I’ll discuss strategies to support people in learning about Jewish genetic health. The final big question the needs assessment addressed was: Now that we’ve measured what people know about Jewish genetics, and how that differs between groups, how can we move the needle?

Needs assessment participants advocated for two main avenues of sharing information about Jewish genetic health: professional education and community education. Some suggested that they would be most receptive to information about recessive disorders and hereditary cancers if it came from their healthcare providers (including therapists) or clergy.

That said, not everyone has a relationship with a rabbi, and not every healthcare provider has the time or bandwidth to address Jewish genetic health in depth with patients. Community education can supplement and complement professional education. Both are necessary to ensure that people feel empowered to manage individual and family health.The Norton & Elaine Sarnoff Center for Jewish Genetics already provides opportunities for professional education and community education, and these findings are helping us to grow and refine the educational supports we offer.

Participants recommended a variety of approaches to engaged constituents, themselves, and their peers:

  • In-person programming: speaker events, small-group discussions, panel events
  • Virtual outreach: webinars, podcasts, email newsletters, social media, short explanatory videos
  • Physical resources: flyers, pamphlets

Participants also spoke of the power of peer education and learning from their families about health. We can most effectively educate at-risk families of Jewish ancestry by reaching them through a variety of avenues. Different formats and topics interest people across the lifespan, so developing a menu of options for education is critical.

Tune in for our last post to learn about what we’re taking away from the needs assessment process. I’ll share our recommendations and next steps based on these findings.

Download the needs assessment here. 



Who Knows About Jewish Genetic Health?

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Needs-Assessment

By Becca Bakal, MPH

Welcome to the second blog post in our series about findings of the Norton & Elaine Sarnoff Center for Jewish Genetics community needs assessment. Last week, I shared an overview of what we learned about community knowledge around Jewish genetic health.

Today, I’ll dive deeper into differences in knowledge levels. Who tends to know the most about Jewish genetic health, and who tends to know the least? What people know about Jewish genetic health depends, in large part, on their circumstances.

Several factors shape understanding of and exposure to Jewish genetic health topics. These include:

  • Personal & family health experiences
  • Age
  • Life events: marriage, childbearing
  • Gender
  • Jewish ‘Resume’: Involvement in Jewish communal spaces
  • Education and socioeconomic status

Here’s a taste of what participants shared in interviews, focus groups, and surveys:

 Personal experiences: “I’m on my toes about it”
Having a personal experience with genetic screening around family planning or cancer diagnosis, or knowing a family member or friend who did, often led participants to feel more informed about Jewish genetic health.

One college student said, “My grandmother died of pancreatic cancer. I’m on my toes about it. Knowing how common cancer is, too, makes me a little less afraid but it’s important to be on your toes if anyone [in your family] has died from cancer.”

“Unless it’s touched them personally or their families, they probably don’t know about it”
Participants who didn’t know someone who had been affected by hereditary cancer, recessive genetic disorders, or other genetics-related health issues said, for the most part, that these topics did not feel relevant to them. As one rabbi summed it up, these issues were “not on their radar.”

Age and life events: “It doesn’t come up until it does”
Younger people and single people are less likely to know about recessive genetic disorders and hereditary cancers. Only 44% of people under 25 reported knowing someone who has gone through carrier screening—compared to 68% of people 25-39 and 87% of people aged 40-54.1 People under age 25 understand less about hereditary cancers than any other age group.2.

Two experiences pivotal to learning about recessive disorders are marriage and childbearing. Many people first heard about carrier screening as they were planning to start a family. Others first heard about it in prenatal care.

As people age, they, and their peers and family members, are more likely to be directly affected by cancer. People aged 40-54 and above tend to know more about this topic than younger individuals.3 One rabbi said, “I feel like I know so many women right now who are my age who have breast cancer, so it’s definitely on forty-something mothers’ minds.

Gender: “Nobody ever talks to a dude about this”
Even though recessive genetic disorders and hereditary cancers affect people of all genders, women were more comfortable discussing both topics. Participants generally felt that women are more likely to pursue medical information.

  • Women are more likely to report knowing someone who has had carrier screening than men: 72% of women surveyed did, compared to just 54% of men—almost a 20 point difference.4
  • Women also knew more about hereditary cancers than men: they understood, on average, 80% of concepts related to hereditary cancers, where men understood 72%.

The impact of BRCA1 and BRCA2 mutations on women is fairly visible in some communities, but the impact on men is discussed less frequently.

Jewish ‘resume’: “If you grow up in the Jewish system, you probably get it somewhere, but not everybody grew up in that system”
Many Jewish professionals and healthcare professionals pointed to the barriers of reaching people who don’t “grow up in the Jewish system” with information about Jewish genetics. One obstetrician-gynecologist said, “I don’t have to talk to the Orthodox Jews about this, they’ve done all their screening. It’s more with the casual Jew that this comes up in practice.”

Education and socioeconomic status (SES)
Like overall health literacy, Jewish genetic health literacy is related to educational attainment. Many of the participants who were most knowledgeable about Jewish genetic health had graduate degrees. Many people cited college as where they first learned about Jewish genetic health.6

We did not directly collect data on income levels, but we suspect that people with higher household income are more likely to access carrier screening. The majority of participants in the Sarnoff Center’s carrier screening program who report their income level have a household income of more than $100,000 a year. Low-income people face various barriers to accessing information about Jewish genetics, from lack of internet access to not having medical insurance. We still have much to learn about how best to reach low-income individuals.

The main takeaway
Some individuals are more likely to be aware of Jewish genetic health concerns than others. The Norton & Elaine Sarnoff Center for Jewish Genetics will use these findings to improve educational resources, tailoring them to support different needs.

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6. There may have been some confounding by age because older people tend to have achieved higher levels of education, but this effect held when we eliminated participants below age 25 from the analysis. 


Calculated Risk: New Tool May Identify Genetic Warning Signs

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GP Appointment with Laptop

By Carol Guzman

Scientists at the Broad Institute and Harvard University have created a tool that catalogs more than 6 million spots in DNA to create an aggregated "risk score" for 5 common diseases. The New York Times reported last month that patients may soon be able to upload their genetic data to the new program to calculate their inherited risk for disease. 

Will this new algorithm help patients make better decisions regarding their health?

First, let’s briefly explore how this tool works. In biology class, we were taught that one distinct gene is responsible for your eye color and another for your height. Think Gregor Mendel's pea plants. These monogenic mutations are essential for carrier screening and tracking family history. 

However, observable characteristics and many diseases occur through polygenic inheritance – involving many genes. Each of the small changes alone may have a very small impact. Thus, looking at each of the 6 million genetic markers individually may not provide much insight, but when evaluated together, doctors may be able to better calculate an individual’s inherited risk of heart disease, breast cancer, Type 2 diabetes, chronic inflammatory bowel disease and atrial fibrillation.  

The NYT report describes the algorithm’s ability to aggregate the risk of all 6 million markers into a "risk score." As the NYT report describes, a patient’s assigned “risk score” may help doctors advise them on preventative care. While this holds a lot of promise, it also raises some concerns:

  • As genetic tests, such as this one, become more common in primary care practice, many more genetic counselors will be needed in general practitioners’ practices – As more genetic tests become available the need for genetic counselors continues to grow. The National Society of Genetic Counselors states there are currently 4,600 certified genetic counselors. That is one genetic counselor for every 78,000 Americans. (Read more: Can Genetic Counselors Keep Up with 23andMe?)

  • Your “risk score” is not an absolute determinant of your health, personal lifestyle choices have an affect You've heard of nature versus nurture. If an individual with a high “risk score” acts on preventative care advice, they may decrease their risk of having the genetic disease. The opposite can be true of someone with a low “risk score”. (Read more: How do your genes and the environment interact?)

  • There is a lack of diversity in genetic research, which means that this research and tool may be more relevant for some people than others – a problem for healthcare equality – Based on a study done by Nature, African and Latin American ancestry, Hispanic people and native or indigenous peoples represent less than 4% of genome-wide associate studies. (Read more: Genomics is failing on Diversity)

  • Taking advantage of this genetic tool could lead patients to risking their access to long-term care – impacting the insurance market place – As more high-risk individuals seek long-term care insurance and lower-risk individuals opt out of such policies, insurers will increase rates for policyholders, making the insurance marketplace unsustainable. (Read more: Does Genetic Testing Create a ‘Perfect Storm’?)

While we can debate pros and cons of a new tool, one thing we can all probably agree on? This is the way of the future. 

If you have questions about your genetic health, reach out to Sarnoff Center or your doctor.

New Partners Make the New Year a Little Sweeter

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Keshet

Much has changed about the Sarnoff Center since 2014, starting with the fact that we weren’t even the Sarnoff Center back then! We have an entirely different staff, a totally revamped carrier screening program, lots of new and expanded programming, and too many other changes to mention.

But 2014 marked the beginning of what has become one of the Sarnoff Center’s most popular traditions: our annual Rosh Hashanah gift bag initiative. We work with synagogues to distribute bags to congregants with honey sticks, caramel apple lollipops, along with a mini brochure about our services and programming.

That year, we had requests from just two synagogues, and one independent city minyan, totaling about 2,700 bags. Every year since, the requests have grown, and this year we will be distributing more than 11,000 bags to 30 congregations in the city and suburbs! This was our biggest year yet, and we knew we needed help.

So, we turned to our friends at Keshet, and their GADOL program. GADOL offers employment opportunities for young adults with intellectual disabilities. GADOL turned our project into a paid learning project for their team members. The experience also included working alongside volunteers from outside GADOL, which included Sarnoff Center staff and some of our Board members.

We are fortunate to do our work in a thriving, diverse Jewish community that affords us the chance to find new ways of working across agencies to serve different segments of our community. We are grateful to Keshet GADOL for joining together with us on this project, and we hope this will be the start of another annual tradition.

L’shana tovah!

Baby1

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.