The new Netflix documentary “Unnatural Selection” is ostensibly about the potential downsides of the “biohacking” movement and the ethics of various forms of “gene editing.” But, whether intentionally or not, it also is largely engaged in scaremongering against the field of reproductive medicine and evidence-based, research-backed science used to help people conceive healthy babies.
Because when a documentary on a highly popular streaming platform starts contextualizing this form of life-saving medicine as the flippant, and ethically dubious, practice of creating “designer babies,” it feels not just inaccurate, but dangerous.
I suppose I have a “designer baby” in the sense that I have a small child who relishes in picking her own outfits, can spend endless time shopping for clothes, has asked for clothing in lieu of toys for her birthday and, at the tender age of 4, draws pictures of her own “dream come true outfits” and wants to learn to sew so she can make them. That’s a designer baby. Sure.
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But that’s the only kind of “designer baby” I have: The fact that she was conceived through in vitro fertilization using pre-implantation genetic diagnosis isn’t what makes her one. The assistive reproductive technologies that helped bring her into the world are also more or less the very reason she’s alive.
When I was first pursuing parenthood, a number of endocrinological issues landed me at a reproductive endocrinologist’s office. But, soon enough, I learned that both my partner (at the time) and I were carriers of the genetic disorder Tay-Sachs. (Though the stereotype is that Tay Sachs gene carriers are only people of Ashkenazi Jewish heritage, the genetic mutation responsible for the disease is also more common than average in certain French-Canadian, Amish and Cajun communities as well.) This meant that there was a 1 in 4 chance that any child we had together would be born with a fatal and untreatable regressive neurological disorder. Children with Tay-Sachs typically live to be toddler-age, at which point they lose function of their brains and organs and eventually die a horrible and painful death.
Having a child with Tay Sachs, though, is avoidable for parents who know their own statuses, thanks to the phenomenal advances in a field that is committed to helping more babies be born with long and healthy lives ahead of them.
My child wasn’t crafted in a lab to meet superficial preferences, or create to have certain traits that did not already exist in her genetic sequencing, as the term “designer baby” implies. Rather, the embryo that existed long before she ever became a person was biopsied to identify whether it was one of the ones that didn’t include genes that would kill her. She wasn’t “designed”; she was allowed to live.
There are constantly new advances in the field of reproductive endocrinology, and I am awed each time I hear about them. Just take the pre-implantation genetic screening that our doctors used to screen for Tay Sachs and was, when we underwent the procedure, being used to check for other chromosomal abnormalities, like ones that lead to miscarriage. Now, some individuals may elect to have their embryos tested if there is a family history of diseases like cystic fibrosis or muscular dystrophy and have only embryos without the single gene mutations transferred. This kind of genetic testing of embryos does not just stop children from being born with, and dying from, conditions ranging from Fragile X to breast cancer, but also allows for entire future generations to be born without them. Through this kind of genetic testing coupled with IVF, genetic inheritances that could lead to deaths can be stopped altogether, because only embryos that do not contain those genes would transferred during a cycle. That isn’t designing a baby; it is public health.
Those who take issue with the advances in ART and reproductive medicine are often quick to cite ethical questions, and even accuse parents and doctors of “playing God.” But all of these procedures are elective — and they are used not to “design” a baby, but to allow for parents to choose those embryos that stand the best chance of becoming babies and then children and then adults who can live long and healthy lives.
When ART and “designer babies” gets mentioned in the same breath as fledgling developments around biohacking and gene editing, it does a disservice not only to the physicians, embryologists and geneticists committed to helping more people have more healthy children, but is harmful to the consenting adults who have made the choice to opt-in (and pay for) this kind of treatment in their desire to have healthy children. And it feels doubly unfair to the children born from this kind of phenomenal scientific advancement — children who got the chance to be alive.
So let’s retire the phrase “designer baby” when we’re talking about the choices that people make in pursuit of a healthy family of their own. There’s nothing silly or frivolous about this pursuit, but rather quite the opposite. The individuals who pursue these advances — and the doctors and sciences who guide them through it — are all tasked with only the most serious of pursuits: giving individuals a shot at becoming parents to children who can one day have the choice of whether they want to be parents themselves.