A Reality Check for Gene-Editing Ethics

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

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.

To have these diseases will signify that you were an accidental pregnancy or that your parents didn’t have the resources to perform IVF with screening. Thus the stigma that we attach to other preventable congenital differences, such as fetal alcohol syndrome, may be extended to genetic disorders that we currently consider to be “bad luck” and evenly distributed across the population. One can further imagine the impact of this stigma on care for these individuals, in everything from the adoption pool to special education or Medicaid funding to employment discrimination.

A Ph.D. student-researcher in an adjacent field sums up the concerns about equity:

A professor of mine liked to pose the following scenario to his undergraduates: Imagine that we develop a brain stimulator that improves memory and abstract reasoning and makes it easier for people to pick up knowledge-economy cognitive skills; in some important sense, it is a device that makes people “smarter.” Say it was on sale for a quarter million dollars, and though there will be some subsidies, the majority of devices will go to people who can pay.

The undergrads squirmed at this idea. Then the professor asked: Why did you choose to attend a four-year, private college? How is that different?

We are already technologizing, data-mining, and price-discriminating so many building blocks of a good life: education, fresh produce, fitness, matchmaking.

Access to preventive medical care is distributed unequally. Access to prenatal care is distributed unequally. If we build more precise tools for preventive and prenatal care, genetic or otherwise, those will be distributed unequally, too. I don’t have a clear answer as to whether parents should be punished for opting out, but if they are, universal compulsion would only make sense as the complement of universal access.

Of course we’ll tend towards a consensus that has too much of the former and not enough of the latter.