The Atlanta Journal-Constitution
Nonprofit aims to save heartache down the road
Genetic screening awareness week is Feb. 3-7.
Monday marks the beginning of the first Jewish Genetic Screening Awareness Week.
And, this being February, there are at least a dozen other awareness efforts just as there were in January and will be come March and the nine months that follow. February is, of course, the month in which we raise awareness about HIV/AIDS, Teen Dating Violence and screen for eating disorders, among a long list of other things.
Now comes Feb. 3-7, the week JScreen hopes will get us to focus on genetic screening and more specifically the need for people here and across the country to take charge of their health and any children they hope to have in the future. To kick things off, the Georgia Legislature is expected to pass a proclamation to highlight the effort midweek.
JScreen, you might recall, is a national nonprofit public health initiative dedicated to preventing Jewish genetic diseases. But the goal is to prevent diseases common in other ethnic groups as well, said Karen Arnovitz Grinzaid, an assistant professor of human genet
ics at Emory University and JScreen’s executive director.
The nonprofit, based at Emory University, began in 2010 as a pilot project in Atlanta and has since evolved into a national initiative offering affordable, accessible and comprehensive genetic screening.
Since its national launch in 2013, Grinzaid said, JScreen has helped thousands, testing people from every state across the country and offering services remotely.
That means once you register for a genetic screen kit at jscreen. org, JScreen will mail the kit to your home. All you have to do is spit in a tube and mail the saliva sample to the lab. A genetic counselor will then report the results either by phone or secure video conference.
For people with health insurance, the cost, regardless of coverage, is $149 and includes the testing and follow-up genetic counseling. The self-pay price is $349.
“While the focus is on the Jewish community, screening is encouraged for anyone planning to have a family,” Grinzaid said.
JScreen screens for over 200 diseases. For most of these diseases, both parents must carry the same recessive gene in order for their children to be at risk.
So why an awareness week?
“We’re always trying to raise awareness, but by dedicating a week and calling this out, we can save lives,” Grinzaid said. “So many people don’t hear about genetic screening until they show up pregnant in their doctor’s office. At that point, if they are a high-risk couple, they don’t have as many options to help them plan ahead for a healthy baby. Genetic screening is something people should ideally do before they get pregnant.”
Unlike other awareness campaigns, JScreen’s promises to be very purposeful, focusing each day on a specific theme in hopes that more people will take advantage of screening.
On Monday, organizers will be laser focused on Tay-Sachs, a rare, inherited disorder that destroys nerve cells in the brain and spinal cord.
On Tuesday, they’ll turn their focus to college students. While having a baby may be the farthest thing from any student’s mind, discounted screenings will be provided at colleges and universities across the country so students will have access to important information they need for future family planning.
BRCA awareness will follow on Wednesday. Ashkenazi Jews are at 10 times greater risk to have a mutation in a BRCA gene, increasing their risk for breast, ovarian, prostate and pancreatic cancer.
Then on Thursday, Jews with Sephardi and Mizrahi ancestry, such as Persians, Syrians and Bukharians, are encouraged to be screened.
Finally on Friday, interfaith couples will be the focus. While there are a number of diseases that are commonly found in people with Jewish background, Grinzaid said these diseases also occur in the general population, making screening important for interfaith couples as well.
That’s not all. Beyond carrier screening, Grinzaid said that JScreen is running the PEACH BRCA study for people with Jewish background who are at risk for carrying a BRCA mutation based on their ancestry. Knowing one’s BRCA status can be lifesaving.
“We’re piloting BRCA testing in metro Atlanta,” she said. Participation in the study is free, but you must be at least 25 or older, male or female, and have at least one Jewish grandparent and no personal or close family history of related cancers.
Of the 500 available slots, only 100 are left. People interested in learning more about the PEACH BRCA study can log on here: jscreen.org/ brca.
Once the study is complete, JScreen will launch a cancer genetic testing program nationally.
For information about any of these programs or to register for a screening kit, log onto jscreen. org.
Sure, the focus for now is on this week, but you can get screened any time and you should. Genetic testing is just that important.