Back in 2009, I went to the doctor to get some blood drawn. I was pregnant — not even showing yet — but it was time to get my genetic testing done. I looked away when the lab tech stuck me with the needle because blood makes me queasy. She started filling vials with my blood. One after another after another. There were like nine, at least.
“There are so many,” I said to the tech.
“It’s cause you’re Ashkenazi,” she said.
And then… I passed out.
Turns out, genetic diseases like Tay Sachs, Canavan disease, and even cystic fibrosis are more common in Ashkenazi Jews. Thankfully, my tests all came back negative. But genetic testing hasn’t always been so thorough. In fact, today we have access to so much genetic information about our children that it can feel overwhelming. Journalist Bonnie Rochman knows this first-hand.
Bonnie is a mom of three, and the author of the book The Gene Machine: How Genetic Technologies Are Changing the Way We Have Kids – and the Kids We Have.
Tune in to hear the surprising ways in which access to your child’s genetic information can both save lives and create unnerving moral dilemmas.
More on Genetic Testing
These are some of Bonnie’s favorite resources for parents and people navigating the world of genetic tech.
The National Society of Genetic Counselors website has a function that allows you to search for a genetic counselor in your area.
JScreen spreads the word about the importance of genetic screening in the Jewish community.
The Mighty publishes stories from people and parents living with disability, disease and mental illness.
The National Organization of Rare Disorders is a patient advocacy organization that works for the identification, treatment, and cure of rare disorders.
The National Down Syndrome Society is Bonnie’s go-to for Down Syndrome questions and information.
The Personal Genetics Education Project explores the benefits and potential pitfalls of personalized genetics.
Have YOU used genetic technologies to make a family?
Did you pass out from the blood draw, too? Tell us. In the comments.
Hero Image Credits: Book cover design by Mark Melnick and photo by Victoria Blackie/Getty Images