CJG Blog

Center for Jewish Genetics blog

From Science Labs to Facebook Clickbait: Is Science Up to Interpretation?

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Med-Lit

By Carol Guzman

A genetics study done by doctors or scientists could fill up multiple pages of a peer-reviewed journal. But when that study finds its way onto the nightly news or your Facebook feed, you’ll often find the research distilled down to a catchy headline.

Sometimes, the lack of details and context can leave the public with a misleading or altogether wrong takeaway. Tips to combat the growing tide of scientific misinformation and improve health literacy include:

  •  Approach health news with a healthy dose of skepticism. Most articles highlight a study’s positive results. Consider challenging your own assumptions and placing findings in context. It is easier to write a story on a study with positive results, or results that agree with what scientists are trying to prove versus negative or inconclusive results  

  •  Google the reported study.  When mainstream media reports on a scientific study, they typically include a link to the scientific/academic article. Check out a previous Sarnoff Center blog post with helpful resources on how to tackle reading scientific articles. 

  •  Evaluate the scientific journal’s reputation. Not all scientific journals are created equal, use resources like the Scimago Journal & Country Ranks to gauge the journal’s standing in the academic community.

  •  Check the scientists’ credentials: Look up the scientist’s academic profile or their intuitional affiliation. Is it a well-regarded university? Do their affiliations reflect a conflict of interest?

  •  Search for similar studies. Studies that are replicated or show results consistent across many studies are more likely to be solid. 

So many aspects of our lives – specifically, how we approach our health – rests on scientific research. News organizations tend to focus on bold and exciting headlines about provocative new studies, resulting in incomplete reporting and misinterpreted results. 

However, we cannot fault non-scientists for all the click-bait junk science articles. A single scientific study can fool many people, even if conducted by highly-regarded scientists . An aspect of what makes science so powerful is the ability to self-correct false findings. This occurs when another group of scientists chooses to replicate an older study and do not reproduce the same findings as the initial study. Another way this happens is when the initial group of scientists self-identify a mistake in their study that was able to slip through the cracks of a peer-review. Unfortunately, redactions or corrections are not as well publicized as initial studies.

As advances in genetic research shed light on how genes influence our lives, a small but vocal majority are using scientific articles to reinforce incorrect understanding. A newly released PBS documentary, “American Masters: Decoding Watson,” explores the life and legacy of Dr. James Watson, one of the discoverers of DNA’s structure in the early 1950s. Watson, now 90, is a controversial figure because he insists genes influence traits in different racial groups, despite many recent genetic studies concluding otherwise. 

It’d be easy to brush off the Nobel Prize winner’s tale as a story of an old man holding onto outdated ideas, but white supremacists are also twisting science to fit their ideologies. White supremacists have recently appropriated a study about a mutation of the gene responsible for digestion of lactose claiming that only those of European are able to digest milk into adulthood. However, had they read the academic article in its entirety they would have read that the mutation also occurred in other populations, individuals of East African ancestry.

Even with the best intentions, journalists and scientists may fail to accurately report the findings of a scientific study or article. Everyone, even winners of a Noble Prize, can misunderstand an article and spew incorrect information to the public. Scientific health literacy is a vital tool, start by questioning what you read and find better resources that can help you make informed decisions about you and your family’s health. 

Consider the tools/resources below as reliable resources for health-related news:

FORCE X-Rays Blog

Health News Review 

- The Sarnoff Center's Genetic Counselor is another available resource to help you answer genetics questions

How much credibility should you give to the results of a single DNA ancestry test?

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Arms 3

By Carol Guzman

With the rise in direct-to-consumer tests like 23andMe or Ancestry DNA, people can seemingly easily discover their biological roots. While many are not fazed by the results, which often confirm with a family’s vague oral history of itself, others see their findings as life-altering news that makes them question who they really are. A recent New York Times Magazine report followed one woman’s experience receiving test results that didn’t match who she believed herself to be.

Sigrid Johnson is one of the more than 7 million people who have taken the popular at-home tests, which promise to reveal ancestry and distill ethnic composition down to a pie chart. Johnson, whose biological father was black and biological mother was white, expected her DNA results to show she was half African and half Italian. When she took the test in 2015, her results showed she was 45 percent Hispanic, 32 percent Middle Eastern, 14 percent European, and 9 percent “other” – which included 2.9 percent African ancestry.

That 2.9 percent figure shocked Johnson. She told the Times the results made her afraid others in her community would think she was a fraud. “How can I not be black?” she said. “I lived black. I was black.” Johnson is not alone in this experience.

Earlier this year, Sen. Elizabeth Warren released her DNA results confirming that she has Native American ancestry after facing criticism from political rivals for listing herself as a minority in professional directories while working at Harvard Law School. Rather than relying on a direct-to-consumer test, Warren solicited help from Dr. Carlos Bustamante, a renown genetics specialist and advisor to Ancestry.com. He concluded that there was strong evidence of Warren having a Native American ancestor 6 – 10 generations ago. The Cherokee Nation disapproved of Warren’s course of action, claiming her use of ancestry testing as inappropriate and undermining tribal interests. The criticism and uproar were so intense that many on the left and right questioned whether her decision would impact her potential 2020 presidential campaign.

In August 2018, House Speaker Paul Ryan discovered he had Jewish roots while filming PBS’ “Finding Your Roots with Henry Louis Gates Jr.” While Ryan never knew of his Jewish ancestry prior to the show many Jewish people criticized him for not upholding Jewish values. Unlike Warren, Ryan wasn’t denounced for claiming a Jewish heritage but for not being Jewish enough.

During Hanukah Sen.- elect Alexandra Ocasio-Cortez revealed that after investigating her family history she learned her ancestors consisted of Sephardic Jews. She further explained that Puerto Ricans are descendants of Spanish colonizers, indigenous peoples, and Jewish refugees. Anticipating backlash, the incoming senator tweeted, “Before everyone jumps on me – yes, culture isn’t DNA.”

Ocasio-Cortez’s Tweet rings true: Judaism is not defined by specific percentages in our genetic code but rather how we choose to celebrate and honor our Jewish culture and religion. But it also raises a larger question: what is the relationship between our genes, our culture, and our identity? Consider individuals of Jewish ancestry, who have a higher risk of being carriers of genetic disorders whether they chose to identify as Jewish or not. And yet a convert considers Judaism a core part of their identity without having any Jewish ancestry. 

Sigrid’s core identity should not change just because her DNA test results do not align with the way she chooses to live her life. Ancestral testing is limiting and does not determine whether an individual has the authority to claim a heritage or culture.

Ancestry testing can be fun but does not provide a comprehensive picture of our identity and certainly is no substitute for health risk testing. For questions about carrier screening, cancer risk testing or other clinical genetic tests, please contact that Sarnoff Center.


Why I’m Thankful for Three Thanksgivings

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SarahsFamily

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.

 

Moving Forward: Using Our Community Needs Assessment to Inform Our Work

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Needs-Assessment

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:

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.


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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.

CJG-Whats-In-Your-Genes

Do You Know What's In Your Genes?

What is the most valuable gift you can give to your family? The gift of good health! There are many health conditions that run in families. Knowing your family health history can alert you to the potential risk for a variety of genetic disorders . Talk to your relatives for warning signs and assess your risk for hereditary cancers.

Did you know: Ashkenazi Jews are 10 TIMES more likely to have BRCA mutations, which significantly increases lifetime risks for hereditary cancers, so what does this heightened risk mean for you? Click here to learn more .