CHICAGO – Oct. 18, 2023 – The majority of young people of Ashkenazi Jewish descent know little or nothing about their risk for cancer-causing BRCA1/2 genetic variants and Jewish genetic diseases (JGD) such as Tay-Sachs disease – and they know less about them than they did a decade ago, according to results of a survey being presented at the National Society of Genetic Counselors (NSGC) 42nd Annual Conference.
Jewish people of Ashkenazi ancestry (from Eastern and Central Europe) are at increased risk for a number of genetic diseases or passing on genes for those disease to their children. But about 60% of young people surveyed said they had not heard of or did not know much about BRCA1/2 variants (which increase the risk of breast, ovarian, pancreatic and many other cancers) and more than 75% had not heard of or did not know much about JGD. Additionally, their genetic knowledge about those conditions was lower than it was in 2014.
“This suggests a need for evaluating current efforts to educate the Ashkenazi Jewish population about their increased carrier rates for Jewish genetic diseases and BRCA1/2 cancer susceptibility genes,” said Hayley Granger, MS, lead author of the study and a genetic counselor at Prisma Health Department of Obstetrics and Gynecology, Columbia, South Carolina. “To improve that knowledge we recommend that Jewish genetic health concepts be incorporated into the bar/bat mitzvah curriculum by Hebrew schools and Jewish day schools. It would be the initial stepping stone toward eventually adapting healthy genetic behaviors, such as meeting with a genetic counselor, considering genetic testing, sharing results with relatives and thinking about reproductive options.”
The researchers conducted an electronic survey of Jewish and non-Jewish organizations across the U.S., including questions from a previous Ashekanzi Jewish genetic health knowledge assessment survey conducted in 2014 and some new questions. Overall, 119 people aged 18-27 who said they had at least one grandparent of Ashkenazi Jewish ancestry responded. Of those, 34 (28.6%) said they had never heard of BRCA1/2 genes and 37 (31.1%) had heard of the genes but did not know much about them; and 24 (20.2%) had never heard of JGD and 66 (55.5%) had heard of them but did not know much about them. Researchers also asked a series of questions to test their understanding of genetics and respondents scored lower on both BRCA1/2 variant and JGD knowledge than they had on previous surveys: 77.1% in 2023 vs. 80.0% in 2022 for BRCA1/2 variants and 78.2% in 2023 vs. 81.4% in 2014 for JGD.
“It is possible respondents have an accurate, working knowledge of genetic concepts due to their high-level of education but are unfamiliar with the increased chance for implications related to their own health due to their ancestry,” said Granger. “While genetic education and screening recommendations in the Ashkenazi Jewish community began on a large-scale decades ago, there appears to be gap in effectively implementing education for those who may be at risk, including young adults.”
Many Jewish people of Ashkenazi descent carry a harmful genetic variant (meaning they could pass it on to children) for various genetic conditions. The most common are: Gaucher disease (1 in 10 people of Ashkenazi descent are carriers); cystic fibrosis (1 in 24), Tay-Sachs disease (1 in 27), familial dysautonomia (1 in 31) and spinal muscular atrophy (1 in 41).
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About the National Society of Genetic Counselors
NSGC is the leading voice, authority and advocate for the genetic counseling profession. Membership represents more than 5,000 masters-level health professionals, who are committed to ensuring that the public has access to genetic counseling and genetic testing. For more information, visit www.nsgc.org.