Needs-AssessmentBy 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 assessmentLast 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.