MAY 2019. DISCOVER 37
money. “It will go exponential very quickly,” he says.
Church also has an answer for those worried about a dysto-
pian future. In some communities, he points out, people are
already using genetic data to decide whom to love and marry.
MATCHMAKER, MATCHMAKER
Genetic matchmaking is simply a part of marriage for one Jewish
community. Decades ago, about 1 in 3,600 children born to
orthodox Ashkenazi Jewish parents were diagnosed with Tay-
Sachs disease, a rare, recessive genetic disorder that appears a
few months after babies are born. The disease progressively kills
nerve cells until the infant can no longer crawl or even turn over.
Eventually, the child dies.
The situation prompted scientists and community members
to come up with a plan. In high school, boys and girls have their
DNA sequenced. They’re assigned a number, but not told if
they’re a carrier of the disorder. Once a couple is ready to get
married, they send their numbers to religious officials, who
compare them. If neither person — or just one — is a genetic
carrier, they’re simply told that they’re likely a healthy match.
But if both carry genes for Tay-Sachs, the couple is informed
and given genetic counseling about their options. Thousands
of Ashkenazi couples go through the process every year, and
more than 4,500 have decided not to get married as a result. It’s
already helped reduce cases of Tay-Sachs significantly.
Church imagines a variation of this program for couples
everywhere. Existing social media and online dating sites could
be modified to implement this kind of genetic matchmaking at
a population scale — for all diseases.
In Church’s vision, these kinds of services would add in a
genetic screener. If a match might lead to offspring with a fatal
disease, you wouldn’t be shown that person. To ensure the
privacy of those screened out, a few people would be randomly
removed as well.
The prospect of giving up on love simply because an algo-
rithm has decided you may be unfit — like the Ashkenazi
model — might be a little much for some people. But that’s not
necessarily where such a system might lead.
“I don’t think people are going to do that,” says Stanford
University bioethicist Hank Greely, who specializes in the legal
and ethical issues of genetics. He says it’s silly to think you could
generalize from one tight-knit group to the rest of the U.S. “It’s
a very different culture from the rest of the country,” he says.
Instead, he suspects that if people did get their genome
sequenced, they might use the information to gauge their risk
of having children with genetic diseases. Then they might
decide to roll the dice, adopt, not have kids or use pre-screened,
implanted embryos.
Greely also downplays another common fear. It would be
almost impossible for people to use their genome sequences
alone to produce designer babies, he says. That’s because most
traits, like height or intelligence or even eye color, involve a huge
number of genes, many of which are unknown. By contrast,
many genetic diseases come from just a single gene.
And as far as discrimination from employers and insurance
companies goes, Church is counting on the Genetic Information
Nondiscrimination Act of 2008. The law made genetic discrimi-
nation illegal in the U.S., though it doesn’t cover some services,
like life insurance.
Church says no insurance companies would have access to
discriminatory information about patients’ genetic data. But
insurance companies, and even patients, wouldn’t necessarily
have to see the genomes to benefit, he adds. Software could play
matchmaker for family planning, tipping couples off to problems
and cutting rates of genetic diseases.
Furthermore, Greely says he’s not really worried about people
getting access to his genomic data, even though he doubts
Nebula — or any other company — can guarantee their data-
bases won’t be hacked. “I’m far more concerned with my credit
card receipts and Google search history,” he says. “Those say a
lot more about me and my life than my genes do.”
In the end, Greely says the biggest concern may be having
everyone walking around thinking about their genetic fates.
Armed with knowledge of your predisposition to a certain dis-
ease, you might be able to take preventive action. But for many
conditions, there’s no cure. “Do you really want to know all that
info?” he asks.^ D
Eric Betz is digital editor of Discover. He’s on Twitter: @ericbetz
Genetics 101
Tay-Sachs is a recessive genetic disease. That means, for the
disease to manifest, both copies of a gene must have the Tay-
Sachs mutation. Some people can be carriers for the disease:
They have one mutated copy, but their second copy is healthy
and dictates how that gene is expressed. But if two carriers have a
child, there’s a chance the child could inherit both mutated copies
from their parents and could end up with the disease. In some
communities of Ashkenazi Jews, who are at a higher risk for the
disease, there’s already a variation of genetic matchmaking to
prevent cases of Tay-Sachs.
Carrier
Carrier Unaffected
Affected
Unaffected
JAY Carrier
SM
ITH
Carrier Carrier
Carrier
Unaffected
Unaffected Carrier