By Sarah Goldberg

Growing up with divorced parents, the Thanksgiving holiday was always a little complicated. When you’re Jewish, almost every holiday you celebrate has two (or more) nights – one for each parent. But Thanksgiving is just a single day and night. One particularly memorable year in college, my sister and I celebrated three Thanksgivings: holiday lunch with mom’s side, turkey dinner with dad’s family, and then pumpkin pie with a cousin who was hosting her in-laws.

As hectic as it was, three Thanksgiving celebrations meant more chances to reflect on what I felt thankful for, and more of what I consider the best meal of the year (I can’t get enough sweet potato casserole with marshmallows on top). More importantly, I spent the holiday enjoying time with pretty much my entire family – parents, grandparents, aunts, uncles and cousins on both sides. It was a perfect day to piece together my family health history.

Like many Jewish families, when my relatives and I get together, we share stories and eat traditional meals cooked from recipes that have been passed down for generations. But we don’t talk nearly enough about another piece of our family history: health conditions that may be inherited, too. I might know that my uncle has one health affliction and my grandma passed away from another, but different family members have other knowledge and together we hold more pieces to the puzzle. Putting it all together can help us protect our health and the health of our loved ones.

The Thanksgiving holiday brings families together – whether you have three celebrations, like me, or it’s a simpler affair – to pause and reflect. This year, take the time to reflect on your family health history as well. Discuss your own information, ask questions of other family members, compare notes, and, ultimately, share this knowledge with your healthcare provider and encourage your relatives to do the same. Hopefully, these conversations will help to keep us thankful for our health for years to come.

Happy Thanksgiving!

Not sure how to get started? Learn more about family health history and find tools and worksheets to help you collect key information on our family health history page.

By Becca Bakal, MPH

Welcome to the final installment of our blog post series about the Norton & Elaine Sarnoff Center for Jewish Genetics Community Needs Assessment! In the past, we’ve shared:

• Our process and goals
• What we learned about: 1) What people know about Jewish genetic health, 2) Who knows about Jewish genetic health, and 3) How we can help people learn about Jewish genetic health

On the agenda this time: how we’ll move forward with what we learned from the Community Needs Assessment. We’re refining how we raise awareness about Jewish genetic health topics in both Jewish and secular settings. Our vision is to empower the Jewish community, starting in Chicagoland and moving outward, to take ownership over their health. We hope to:

• Equip folks with greater knowledge of their genetic health risks
• Provide resources and support to help people start conversations about family health history
• Ultimately lower barriers to seeking genetic counseling and medical screenings if warranted
  

As we look forward, the community needs assessment will serve as a guide for the development of educational resources and supports. The Sarnoff Center has already been an educational resource for Jewish communities for almost 20 years, and we’re expanding our educational offerings and tools.  Based on our findings, we developed best practice recommendations that cover four dimensions: Messaging, outreach, programming, and assessment. 

Messaging

• Emphasize empowerment and that people can act to prevent Jewish genetic disorders and hereditary cancers
• Focus on family health history (FHH): How to take an FHH, the benefits of learning about FHH
• Make Jewish genetic health personal: Share how it is relevant to my life
• Address and dispel misconceptions about Jewish genetic health

Outreach

• Reach people where they are: Go to Jewish events, emphasize peer education and education through family members
• Provide resources and support to rabbis, healthcare providers and therapists around Jewish genetic health
• Strengthen partnerships with Jewish institutions and health institutions to get Jewish genetics on the agenda

Programming 

• Develop small-scale educational programs tailored to various audiences
• Design activity-based education in a variety of media, to be delivered both in-person and virtually
  

Assessment

• Assess educational needs of rabbis and healthcare providers, including therapists
• Assess the feasibility of developing a peer education program
• Integrate assessment of pilot educational programs into ongoing program evaluation
  

As we develop educational supports, we’ll use these recommendations as guideposts.

Thanks again to all who participated in the community needs assessment and for those of you following along. We look forward to your continued partnership as we pilot and refine new educational tools.

Interested in learning more? You can download the needs assessment here.

By Carol Guzman

Advancements and discoveries in genetic research and technologies intentioned to help all humans only benefit few. Since the completion of the Human Genome Project in 2003, researchers have sequenced the genomes of various populations all over the world (see: 1,000 Genomes Project). Yet little population-specific research has been conducted to advance the knowledge of disease and personalized medicine in minority groups.

Genome-wide associate studies (GWAS) allow scientists to study and identify genetic markers that are involved in human disease. GWAS compare one group of healthy individuals against a group of individuals affected by a specific disease. In these studies, scientists look at several small gene changes called single nucleotide polymorphisms (SNPs) in both sample populations. GWAS has been used to study genetic factors that contribute to many common, complex conditions such as diabetes, heart disease, and drug metabolism.  The small genetic differences found in the affected group versus the unaffected group help scientists identify genetic variants that may be associated with an individual’s risk of developing a specific disease. After GWAS are used to pinpoint genetic markers associated with diseases, scientists can use this information to guide drug development that treats the root cause of the disease rather than only treating the diseases’ symptoms.

According to a study conducted by Nature, of 2,511 GWAS involving 35 million participants, 81% of participants were of European descent. Of the 19% of non-European ancestry samples, African and Latin American ancestry, Hispanic people and native or indigenous people represented less than 4% of the participants the GWAS studies. Therefore, researchers are developing drugs and other targeted therapies based on disease-associated genetic markers that are typically found in only European populations. Failure to include minority populations results in undiscovered genetic variants associated to diseases. These exclusions make it impossible to make drugs that could treat the root causes of minority genetic variants.

However, finding genetic markers associated for a disease is not as easy as diversifying the population of those participating in the study. The small genetic differences that would be identified could also be natural genetic variation related to differences in race or ethnicity, as opposed to variants associated with a disease. Therefore, we must have global genomic studies to ensure that personalized medicine benefits all human populations. The National Institutes of Health is making a historic effort to gather data from more than one million people in the United States. Their All of Us Research Program will enable researchers to conduct genetic studies on various minority populations in the United States. Still, similar initiatives have yet to be seen on a global scale.

Genetic diversity also plays an important role in better understanding genes that are known to causes certain diseases, such as genes related to hereditary cancer risk. The Jewish population has an increased risk of having a gene mutation that leads to higher breast cancer risk. Knowledge of specific Jewish genetic variants has helped widespread hereditary cancer screening efforts within the Jewish community. African women are also more likely to develop breast cancer compared to the general population. However, it was only this year that University of Chicago conducted the first study focused on understanding genetic variants for breast cancer in African populations. Among African women, breast cancer is diagnosed at later stages, is more frequently a triple-negative disease, and is far more frequently fatal compared to women of other of other ethnicities.

While in some ways the Jewish population remains at the forefront of genetic screening we too suffer from the marginalization instituted from lack of diversity in genetic research. A clear example is the W1282X nonsense mutation of cystic fibrosis, a variant of CF that is highly prevalent among Ashkenazi Jews. This CF genetic variant affects 5-10% of CF cases worldwide. Researchers have created drugs that help 90-95% of CF patients with the most common CF mutations, but none have been made to help those suffering from CF by way of this particular nonsense mutation.

Modern day Jews come from various ethnic Jewish origins resulting in several Jews having different genetic variants of various diseases. By integrating minority populations in genetic studies to improve screening and genetic medicine, the scientific community benefits Jews and the world.

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.