Will Editing Your Baby's Genes Be Mandatory?

An ethical dilemma from the near future

Kim Kyung Hoon / Reuters

Designing a baby, or editing the genes of an unborn child, strikes many as risky, unseemly, unnatural, unethical, or likely to lead to a dystopian future of one sort or another. Still, I predict that within my lifetime, the United States will arrest, try, and convict some parents for refusing to edit the genes of their child before he or she is born.

Consider what is now punished. In The Kindly Inquisitors, Jonathan Rauch’s defense of liberal free-speech norms, the author noted that the liberal, scientific view of  knowledge, which he was championing, asserts a unique claim to legitimacy in the modern West. Lest anyone doubt his characterization, he cited the fate of Christian Scientists:

On December 4, 1984, a 4-year-old girl named Natalie died very painfully of an infection. The cause was a common bacterium that is almost always cured by antibiotics. Her parents, however, did not use antibiotics. They used prayer. To many of us, that sounds preposterous. But imagine what it is to believe fervently in the healing power of your Lord. Imagine that your child is sick, and you want the best treatment, the one that is right and most likely to work. That treatment is prayer, or so you believe with all your heart. And that treatment you use. “We say those parents chose the method of care they felt was most likely to make their child well,” a church official said; and unquestionably he was right.

Then the child dies, and the parents are charged with manslaughter and child endangerment. Over the last ten years there have been dozens of such cases. In 1990 a two-year-old boy  named Robyn died of a bowel obstruction after a five day illness; his parents, David and Ginger Twitchell, were convicted of manslaughter and sentenced to ten years’ probation. Pictures in the paper showed the mother, after the trial, cowering in her husband’s arms as he faced news photographers. David Twitchell said, “If I try a method of care I think is working, I will stick with that. If I think it’s not working, I will try something else.” By his own lights, he had tried his best for his child. Anyone who did not happen to share the worldview of medical science could only view the prosecution and conviction of the Twitchells as the most blatant kind of scientific imperialism. Sure, in Robyn’s case and Natalie’s the prayer treatment had failed. But sometimes antibiotics and surgery fail, too. When surgery fails, should parents be put on trial for not having first tried prayer?

Almost no one believes that parents should be put on trial for not having tried prayer––but legislative majorities do believe that parents should be put on trial for withholding mainstream medical treatment when a child suffers greatly or dies as a result. And the medical treatments that are considered mainstream will change over time.

Now that scientists can use natural enzymes to target and snip genes with unprecedented accuracy, “it seems likely that gene therapies––eliminating mutant genes that cause some severe, mostly very rare diseases––might finally bear fruit, if they can be shown to be safe for human use,” The Guardian reported earlier this year in an article on designer babies. “Clinical trials are now under way.”

Reporter Phillip Ball quoted one expert as follows:

Because of unknown health risks and widespread public distrust of gene editing, bioethicist Ronald Green of Dartmouth College in New Hampshire says he does not foresee widespread use of Crispr-Cas9 in the next two decades, even for the prevention of genetic disease, let alone for designer babies. However, Green does see gene editing appearing on the menu eventually, and perhaps not just for medical therapies.

“It is unavoidably in our future,” he said, “and I believe it will become one of the central foci of our social debates later in this century and in the century beyond.”

In those future debates, gene editing to prevent disease is likely to be the least controversial use. Some folks will grant that trying to reduce disease is a reasonable course even as they argue against gene editing for cognitive or aesthetic enhancement. Others will remain wary of editing the genes of their child. If early gene editing efforts cause harm past some threshold, the backlash may render my prediction incorrect. Barring that, it seems likely that gene editors will gain the ability to safely prevent some awful diseases, and that the holdouts who fear or morally object to their methods will dwindle more and more with every passing year.

Once they’re no more numerous or influential than, say, today’s Christian Scientists, the relevant politics will be quite changed. Holdouts who fear that gene editing is putting humanity on a slippery slope to disaster or who have religious objections to the technique or who just prefer “the old-fashioned way” in their gut will conceive a child. If he or she is healthy all will be fine. But some holdouts will give birth to a child with a painful or fatal condition that could have been prevented.

People will get angry at those parents and seek to punish them.

Or at least that is the course I foresee (even though there is arguably an ethical distinction between refraining from editing the genes of a future human and denying essential medical treatment to an already living human, who is understood to have individual rights independent from or not entirely subject to the beliefs of their guardians).

Regardless of whether you agree with my prediction, I’d like to know what you think about the ethics of this matter. A subset of readers will oppose punishing Christian Scientists today for, say, declining to allow the removal of a burst appendix. Such readers presumably oppose punishing the gene editing holdouts of the future, too.

So I am most curious about the views of readers who are presently okay with punishing parents who deny mainstream medical treatment to their children. What are your instincts about if or when you would punish gene editing holdouts? If the attendant medical procedures were as cheap and safe as a course of antibiotics, would it be unethical to deny a potential human gene editing to avert a serious disease? What if instead of a certainty of a serious disease, gene editing would reduce the chance of a typically fatal cancer by 90 percent? How about by 50 percent? 5 percent? Does it matter how much the gene editing technique would cost?

What other confounding factors, if any, should enter into the picture?

Nothing here should be construed to imply anything about my position. I’ve tried to avoid tipping my hand, save my belief that questions of this sort loom ahead for humanity. I’d like to see your stab at answers. Email conor@theatlantic.com if you’re willing to share.