Reporter's Notebook

Wrestling With the Ethics of Gene Editing
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Responding to Conor Friedersdorf’s essay “Will Editing Your Baby’s Genes Be Mandatory?” readers think through the ethical dilemmas foreshadowed by advances in biotechnology, starting with the question: If gene editing one day becomes a common medical treatment, should parents be punished for opting out?

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A Reality Check for Gene-Editing Ethics

A graduate student in public health and bioethics has misgivings about whether debating a future technology like gene editing is worthwhile:

All of these questions, in my opinion, become wasted energy, because we can’t even DO this yet. And none of them matter, because you haven’t addressed the much larger issue, which is WHO IS PAYING FOR THIS? And that question gets to the heart of why I’m responding to you, rather than working on the 35 pages of papers I need to be writing. Every time journalists and academics write on these topics, they are missing the larger social question: the logistical question of how this technology actually gets applied and who has access to it, particularly when you situate this issue in the current context of our reproductive political reality.

In that current reality, women don’t even have access to BASIC reproductive healthcare. Low-income women in states that didn't accept the ACA expansion don’t have access to contraception. Eighty-nine percent of counties in America are without abortion access. Trump just gave states permission to stop funding ANY women’s health-care clinic that provides abortion services—meaning that they will stop paying for pap tests, breast exams, STI testing, prenatal exams, and other cancer screenings. Women who are carrying fetuses with fatal anomalies can’t access abortions because insurance won’t cover it, and many states have banned abortion beyond 20 weeks without exception.

Reproductive access in America is already stratified. Many couples who know that they are at risk for bearing a child with a genetic disorder can’t afford to access PGD [Ed. note: pre-implantation genetic diagnosis, the method this reader and her partner considered] because many insurance plans don’t cover it. These technologies are only available to the well-insured or the well-off.

On that note, a nurse and medical-school student predicts that uneven access to gene-editing will stigmatize certain diseases, affecting their treatment:

Any prenatal gene editing technology is only possible in an IVF process. While theoretically this technology could be further developed to be implemented in vivo, this would need to occur very early after conception—close timing that would only be possible after a medically managed insemination. Since half of all pregnancies in the country are unplanned and many more are conceived naturally due to the higher cost, logistical barriers, and health risks of IVF, I find it very unlikely that gene editing will become the “norm.”

That said, this ability will add to the privilege of conceiving via IVF, which already allows families to screen egg and sperm donors as well as screen pre-implantation embryos for chromosomal abnormalities. Said another way, single-gene diseases such as muscular dystrophy, cystic fibrosis or sickle cell will soon be eliminated among the IVF population and thus will become a marker for disadvantage.

Valentyn Ogirenko / Reuters

A reader reflects on our ongoing series:

There’s a circle I absolutely cannot square:

I am a strong advocate of abortion rights. I believe women have the right to conceive or not conceive and to abort a pregnancy for almost any reason. Somehow, the intuition which causes me to adopt that position doesn’t map to the context of genetic manipulation. I am entirely comfortable with laws which punish women and men for procreating negligently by failing to use genetic screening and manipulation. I could try to put a veneer on this and reconcile the two views, but I don’t think I can do so honestly. I wonder any of your liberal readers face the same dilemma?

If you have an answer for how to resolve those two views, let us know. This reader spells out the conflict:

In order to be pro-choice, one must hold to the supremacy of the mother’s rights vis-a-vis the fetus. The mother gets to decide what happens with her body, notwithstanding any moral claims we might contemplate assigning the fetus. In that case, it’s hard to see how a pro-choice person could, with ethical consistency, advocate the compulsion of a mother to undergo a procedure for the health of the fetus, which is certainly what gene editing would entail. The mother gets to decide what happens with her body, after all.

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.”