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.

Our next group of correspondents stood out due to their vocations: In one way or another, their chosen careers  brought them into the subculture of scientific thinking. These readers tended to be more favorably disposed to gene editing than others.

Take this reader, a “semi-retired school psychologist and a lover of science” whose daughter plans to become a clinical geneticist:

I agree with the premise of your article [that prophylactic gene editing could soon be mandatory] and am not frightened by it at all. Scientific advances have not, cannot, and should not be stopped. Since the first civilizations science has been dragging religion and society reluctantly along into a more technologically advanced future. What we gain from this seems always to be more than what we have lost.

A medical student who hopes one day to do gene editing was likewise eager for a future where it is used to cure disease––and even to direct the way that humans evolve:

Modern medicine, in its current form, is basically the answer to the question: “What is the best way to treat diseases whose cures cannot and will not ever be found?” Treating someone with cystic fibrosis, for instance, is an admirable thing to do, but it’s also an exercise in futility: That patient will undoubtedly die prematurely. Anything besides excising the mutant gene and replacing it with a normal copy is treading water and delaying the inevitable (though, obviously, the patients must still be treated).

In modern societies, infectious diseases and trauma are more or less under control (relative to developing countries and bygone eras). Curing genetic diseases (cancer loosely being included in this category) are currently a dead end. So, logically, addressing this head-on is the only next step.

I view gene therapy and editing as the way of the future, not only of medicine but also of humanity in general. It will start as the means for cures of currently incurable diseases. Eventually, it will be a means by which we can continue to evolve ourselves as a species. If 3.5 billion years of evolution churned our species out through the natural selection of random mutations, how much better can we do with logic and molecular precision? In my opinion, anything that can widely (and, potentially, permanently) change mankind and society for the better should be done.

I wish I shared the correspondent’s confidence that logic and molecular precision will serve humanity better in this realm than the decentralized systems of dating and mating have done so far. Reflecting on the decisions that literally every bygone generation might have made if able to edit genes, I fear that our choices will prove as imprudent in hindsight––and that’s not even accounting for unintended consequences.

We’ve heard already from a few parents whose children have, or may carry, genetic disorders. This reader’s son suffers from Tourette syndrome, ADHD, and OCD, all severe:

He is a brave and strong-willed young man, and he has chosen to live and manage his issues without medication. He describes the pain, frustration and embarrassment that he lives with; he has endured chronic pain for nearly 10 years due to his severe, seizure-like tics. Tourette syndrome is an inherited disorder. Some 99 percent of males and 75 percent of females carrying the genes for TS will display symptoms. This means that my son will have to confront the possibility that his children will inherit this painful and misunderstood disorder.

He has already declared that he will not have children; he does not want to inflict what he has endured on an innocent child. That’s his decision to make, and, who knows? With the passage of time and improved treatments, perhaps he will change his mind.

But how does it feel to know that society sees you as defective, as a problem to be repaired or edited out? How does he see himself? His voice is the one you need to hear.

He writes:

I like gene editing, and I think that it should be mandatory or at least strongly encouraged when it gets functional on a wider scale.

Two week ago, I asked readers, “Will Editing Your Baby’s Genes Be Mandatory?” That is to say, parents are sometimes charged with crimes when religious beliefs cause them to deny their child lifesaving antibiotics, or an appendectomy, or a blood transfusion. In the future, if and when editing a baby’s genes can prevent an awful disease, the inevitable parents who reject the technology may be similarly punished.

Should that happen?

Scores of The Atlantic’s readers offered thoughtful responses that are helpful for thinking through aspects of biotechnology that will raise ethical dilemmas in future years. Their letters illustrate the diversity of viewpoints society will confront on this issue. Over the next week, I’ll be publishing a selection of correspondence, beginning with readers who have personal connections to the issue.

We begin with a cancer survivor and carrier of Lynch Syndrome, an inherited condition that increases the risk of colon cancer. Each of her children has a 50 percent chance of inheriting the mutation; neither has been tested to see if they do, in fact, carry it.

She writes:

While some may fuss and fret about the ethics of gene editing and so-called designer babies, should either of my sons carry the Lynch mutation, I would not only urge them to use gene editing for their offspring, but I would pay for it myself—as I would for IVF, the current recommendation for hereditary cancer carriers of childbearing age.

The cost of cancer and other diseases is huge—not only monetarily, for individuals and the nation, but also psychologically. Cancer is challenging for even the strongest among us, surrounded by loving care. When one adds in uncertain health insurance and the reality of life insurance discrimination, the ability to root out the cause of disease at the genetic level is not only tempting, but humane, intelligent and compassionate.

But would I force gene editing upon my sons? I would not. And do I believe those who make a different choice should be punished? Using the examples of devout Christian Scientists, I do not. Having been through cancer, I know that prayer is a useful and healthy adjunct to medical care—and if someone has different beliefs, while I may not agree, I cannot condone the state stepping in to punish them in a time of tragedy.

I can encourage my sons to make certain choices, but I can’t force them. And while I wholeheartedly support science and the work being done around gene editing, I can’t force anyone to avail themselves of these therapies—and neither should the government.

This next reader is about to attend a genetic-counseling session with her partner:

We will be finding out about the option of testing fertilized embryos and selecting “healthy” ones to implant. My partner is a carrier of a very rare genetic disorder and has bilateral hearing loss caused by this syndrome. Due to this, he is hard of hearing and uses hearing aids. He also faces the possibility of becoming profoundly deaf later in life.

While we don’t have the ability to edit genes, we could select an embryo that doesn’t have this disorder or will likely be carrier but non-symptomatic. Without this intervention, there is a possibility our child will be deaf or suffer hearing loss.

I keep typing “healthy” in quotation marks because the assumption is that I would want a hearing child … that a deaf child or the possibility of having a deaf child is less than ideal, that being deaf is a problem, something to be managed or fixed and ultimately bad. Isn’t that what we are saying when talking about healthy babies?

Healthy and whole versus unhealthy and broken.

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