Should Parents Who Refuse to Edit Their Babies' Genes Be Punished?

Editor’s Note: This article previously appeared in a different format as part of The Atlantic’s Notes section, retired in 2021.

As I wrote a few weeks ago, advances in biotechnology could make this a pressing question in the near future—and under certain conditions, this reader’s answer is yes:

My gut instinct is that I would lean towards punishment if the parents were to have the fetus tested for genetic abnormalities and diseases and the test came back positive, but the parents still refused to consider gene editing.  It’s knowingly bringing preventable suffering into the world. 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?

Yes, I believe so.

Another reader used a fanciful thought-experiment to reach a similar conclusion:

Let us imagine two prospective parents, set A, each carriers of the Tay-Sachs gene. They have a one-in-four chance of passing two copies of the gene onto a child. Doing so is a death sentence for the child by its eighth birthday.

Now imagine two other prospective parents, set B. These parents decide that on their child’s eighth birthday, they will sit with the child and several friends for a nice game of Russian roulette. The only difference between A and B is that with most handguns, B has given its child a slightly better chance of survival.

I use the graphic analogy to drive home the essential point: Parents who knowingly risk passing on bad genes to a child can cause real harm. They are gambling with the life of another human being. In any other context, such behavior would be instantly recognized as abuse and protective state intervention would be not only defensible but also obligatory. The fancy phrases about dignity and fundamental liberty and so forth are what Peter Singer called “the last resource of those who have run out of arguments.”

On the other hand, the next reader supports penalties for parents who refuse medical interventions, yet does not believe similar penalties will, or should, be applied to parents who refuse gene-editing:

It is my understanding that the majority, if not all, of the cases pursued against parents for not obtaining medical interventions for their children are in cases where there is a clear and immediate danger to the child’s life and health, along with a clear and immediate medical intervention for the child's condition. Such medical interventions must not only have a high probability of success, but also have a high probability of not causing secondary conditions worse than the treated disease or condition itself.

In all cases I can think of, gene editing is not and will not be like this. Gene editing is more like vaccination, and prosecutions of parents who refuse to vaccinate almost never occur. In some respects the case for prosecutions of anti–gene-editors would be even weaker than it is for “anti-vaxxers.”

Gene editing would likely not be an effort to prevent a clear and immediate harm, but would be a treatment for a probabilistic condition far in a person-not-even-born-yet’s future. Gene editing will involve trade-offs where preventing one condition might increase the chance where one will get another. It’s even possible that the first major case to try the merits of gene editing will be brought by a person(s) who has suffered as a consequence of a cosmetic intervention––as the genes related to high IQ seem to be the same responsible for some mental illnesses.

Unlike with vaccines, we won’t have decades of research to back up the fact that such interventions do not pose even larger long-term risks for society. Nor would the failure to make such interventions pose real risks (rather than real costs) on the larger society as it does when parents refuse to have their children vaccinated. Even then, we make exceptions for those who oppose vaccinations on religious grounds—as many of the Amish currently do.     

The fight will likely be over the financial costs imposed by those who have refused to have their children’s genes edited, but that’s only one of a much broader set of health choices parents make and therefore just one component of a much larger debate. Hopefully it will occur through public education and incentives rather than throwing bio-conservative parents in jail.

Says another opponent of punishing parents:

I believe the aims of a legal system should be deterrence and reformation. The former is unlikely to work on people whose convictions are so strong as to deny the benefits of modern medical science in order to save the lives of their children. Meanwhile, reformation seems illegitimate in the context of forcing people to change their religious beliefs.

And still another opponent of punishment writes:

Actively causing harm is qualitatively different from passively allowing harm to take place. In the same way, there is a qualitative difference between allowing harm to occur to a living person, and potentially allowing harm to occur to a future person. Passively allowing harm to occur is often morally wrong; allowing potential harm to a future person may be wrong too. But there are degrees and levels of moral right and wrong, and these are simply less bad than active harm and non-potential harm.

We can make the world a better place, but not a perfect place. And I wouldn’t want to if I could. Perfection would be stagnation. As George Orwell said, “sainthood is … a thing that human beings must avoid.” It is admirable to seek out the problems of the future and seek to cure them, but to codify it as an obligation is a bridge too far.

Yet even if editing children’s genes isn’t legally mandated, this correspondent posits that the social pressure to do it will be very powerful:

There’s a sense today that a pregnant woman should pay special attention to her health. Take prenatal vitamins, visit with a doctor, refrain from drinking, don’t use drugs, etc. I think that in time, gene editing, or some form of gene screening, will come to be seen similarly to the measures listed above—regardless of efficacy.

I don’t know if we’ll punish people who decline gene editing legally. But we sure as hell will socially (for better or worse), and that’ll eventually go on to influence legal measures. I’m of the opinion that access to these procedures should be a “right” once we sufficiently verify them—the potential to prevent suffering is too great to ignore or shy away from.

In the same vein, this reader suggests increasing levels of social and even legal pressure are inevitable, and that this is as it should be:

Society has continuously raised the bar as to what is the acceptable standard of care of a child. We no longer legally permit our children to be neglected or starved to death. We don’t allow them to be used as cheap labor or permit them to be left uneducated. Laws require that they be cared for and treated medically. As time goes on and technology, laws, and social behaviors change, we demand that the previously acceptably level of misery be lowered.

It seems natural that when the required technology is available, we demand that parents not permit children to be born with preventable diseases and conditions that would cause suffering. We can, of course, look far into the future and imagine laws that we would consider to be unbearably intrusive as some sign that technology has usurped our basic human rights, but society will always seek to better itself. It seems natural to me that the future contains laws and expectations that look restrictive and unnecessary to a society that still gives birth to children doomed to die from painful and terrifying conditions, just as child labor laws, or even laws that prevent infanticide, must have seemed absurd to the societies of the past.