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Parents Worry Reproduction Laws
May Complicate Family Planning
SASHA ROGELBERG | STAFF WRITER
F or Jewish parents who are car-
riers of the Tay-Sachs gene, the
worry of passing on the genetic
disease to an off spring 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 aff ect 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 plan-
ning,” said Karen Grinzaid, a genetic
counselor and executive director
of JScreen.

A couple may choose to adopt, use
a sperm or egg donor who is not a
Tay-Sachs carrier or use IVF with pre-
implantation genetic testing to ensure
their baby will not have the homozy-
gous gene that is positive for Tay-Sachs.

“Th at 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 select-
ing the healthy embryos for the preg-
nancy,” Grinzaid said.

Th ough an eff ective 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.

Th ey both had genetic testing pan-
els done through JScreen and under-
went 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 fi rst breath.

While some laws regulating abortion
have explicitly excluded and permit-
ted IVF, bills in Ohio and Georgia
may limit IVF because it deals with
fertilized embryos, some doctors and
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"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.”
KAREN GRINZAID
parents worry. Wernick and Davies are
among those worried.

“I had to have conversations with my
fertility clinic about the criminaliza-
tion of in vitro fertilization and what
happens aft er 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 cou-
ple 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 repro-
ductive rights.

“We need to have solidarity, every-
one, on these issues, on the importance
of this, because this is about freedom,”
Davies said. “And it’s about every fam-
ily getting to write their own story
and fi gure out what works best for
them and what keeps them healthy and
happy and safe.” JE
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