If you could know your child’s entire genetic makeup on the day he or she was born, would you want to? It seems like a smart idea to gain insight into your child’s health issues, ancestry, and genetic risk factors, but with this knowledge comes a host of other considerations.
The National Institutes of Health (NIH) has just announced a $25 million grant program for the full genome sequencing of hundreds of newborns at four U.S. hospitals, but the rise of do-it-yourself, or direct-to-consumer, genetic testing means that all parents, to a greater or lesser degree, can get the same insights about their new bundles of joy.
One of the most popular at-home tests is offered by the company 23andMe. Users of 23andMe have the opportunity to learn amazing and potentially beneficial facts about their children's health, but they also open themselves up to disturbing information that they can do nothing to change.
For example, genetic testing can tell you whether or not your child will succumb to Huntington's disease later in life or be predisposed to early-onset Alzheimer's. Both conditions are fatal and there is no way, yet, to change the genes at fault.
Should You Do It Yourself?
In a policy statement released by the American Academy of Pediatrics (AAP) and the American College of Medical Genetics (ACMG), the organizations recommend genetic testing and screening only when it is “driven by the best interest of the child.”
Genetic testing with a purpose includes newborn and fetal screenings for genetic defects like Down syndrome; these screenings are already common. The organizations discourage any extra testing, such as routine gene carrier testing for children that will not benefit them in childhood.
They also warn that testing can open the door to unexpected discussions of paternity, or difficult conversations with extended family about their own risks. Also at stake are issues of privacy and informed consent, which children cannot give.
According to the guidelines, “The AAP and ACMG strongly discourage the use of direct-to-consumer and home kit genetic testing of children because of the lack of oversight on test content, accuracy, and interpretation.”
Rebecca Nagy, president of the National Society of Genetic Counselors, says the organization also takes a strong stance against direct-to-consumer testing because of a number of complications that can arise, from differences among testing labs looking for specific genetic markers to a lack of family history analysis upfront.
“There’s something to be said for taking charge of your health and being proactive,” Nagy says, but in the end, “it’s really not a one-size-fits-all test.”
She is especially cautious when it comes to children. "Direct-to-consumer genetic testing is not appropriate in a pediatric setting," she says.
Do You Really Want to Know?
23andMe believes that the pros of genetic testing greatly outweigh the cons, but analyzing a child’s DNA is relatively uncharted territory.
“I think there are two ways to look at it from a parent's perspective,” says Jaime Miglino Franchi, a mother of two from Long Island, NY. “The first is that knowledge is power. The testing could be a way to let a parent prepare emotionally and practically, especially if that child is going to need resources when he or she is born.”
“But the second, which is the road I took when I was pregnant, was to go easy on the testing,” Miglino Franchi explains. “A lot of these tests are invasive and expensive. In fact, I switched from a traditional OB/GYN to a midwife because my doctor was pushing so hard for these tests that I questioned her, 'How much are you getting paid for this?'"
As Franchi says, “It's an individual choice—and that was mine.”
Once the realm the very wealthy, 23andMe shows just how far genetic testing has come in terms of accessibility. With such widespread and easy-to-use technology, many are asking themselves provocative questions like, “Who am I?” and "Who will my child grow up to be?"