For Jewish parents who are carriers of the Tay-Sachs gene, the worry of passing on the genetic disease to an offspring is only one part of the family planning puzzle.
Following the Dobbs v. Jackson Women’s Health Organization Supreme Court case, which struck down Roe v. Wade and gave states power to regulate abortion, some parents are concerned about how the ruling may affect the future legality of in vitro fertilization, a common option for couples looking to carry a healthy baby to term.
September is Tay-Sachs Awareness Month, named by the Senate in 2008 as an opportunity to learn more about Tay-Sachs, a fatal inherited disease that destroys nerve cells in the brain and spine.
According to JScreen, a national organization that provides education and genetic testing for more than 230 diseases, one in 30 Ashkenazi Jews is a carrier for Tay-Sachs, compared to one in 300 among the general population.
While testing for Tay-Sachs, which began in the 1970s, has decreased the prevalence of the disease by 90% over the past 20 years, future parents who are carriers of the disease still have to carefully weigh their options when planning to expand their family.
By knowing one’s status, parents can be better informed about their options.
“If you know that you’re a high-risk couple — you’re both carriers for Tay-Sachs — prior to a pregnancy, you have more options available for family planning,” said Karen Grinzaid, a genetic counselor and executive director
A couple may choose to adopt, use a sperm or egg donor who is not a Tay-Sachs carrier or use IVF with preimplantation genetic testing to ensure their baby will not have the homozygous gene that is positive for Tay-Sachs.
“That allows a couple to use their own genetic material, egg and sperm, to make embryos outside the body and do genetic testing on those embryos so that the fertility specialist is selecting the healthy embryos for the pregnancy,” Grinzaid said.
Though an effective way to prevent a child from having Tay-Sachs, current and future laws about reproductive rights may put this option in jeopardy, some parents fear.
By the time Philadelphia residents Andrew Davies and Molly Wernick were married, they both knew they were Tay-Sachs carriers but intended to have biological children.
They both had genetic testing panels done through JScreen and underwent IVF, a $30-40,000 investment, before conceiving their now-year-old son Miller.
According to Wernick, the host of “personhood bills” following Dobbs v. Jackson, which states that life begins at conception, is deeply rooted in Christian theology and violates Jewish thought on personhood, which dictates that life begins at first breath.
While some laws regulating abortion have explicitly excluded and permitted IVF, bills in Ohio and Georgia may limit IVF because it deals with fertilized embryos, some doctors and parents worry. Wernick and Davies are among those worried.
“I had to have conversations with my fertility clinic about the criminalization of in vitro fertilization and what happens after we are done building our family,” Wernick said. “If we have embryos remaining, will I be tried, prosecuted? Will my fertility clinic be tried, prosecuted for any embryos that remain, including the embryos that are homozygous for Tay-Sachs?”
Grinzaid said that JScreen is not an advocacy organization and that they always defer to a parent’s health care provider to give guidance on family planning, including on whether a couple should pursue IVF. She believes that IVF is not yet at risk of being banned.
Still, Davies and Wernick believe the story of their family-building, as well as others experiencing pregnancy complications, such as deadly ectopic pregnancies, needs to be included in the greater conversation about reproductive rights.
“We need to have solidarity, everyone, on these issues, on the importance of this, because this is about freedom,” Davies said. “And it’s about every family getting to write their own story and figure out what works best for them and what keeps them healthy and happy and safe.”