Opinion

A reminder why gene-edited embryos are a terrible idea

CRISPR is a tool that allows scientists to edit pieces of DNA. Gene editing in embryos is highly controversial and illegal in most areas. Image by Ernesto del Aguila III/NHGRI/NIH/Creative Commons

(RNS) — The 50th anniversary of 1968 has brought with it many considerations in the press and elsewhere about how consequential a year it was in the United States.

One of the most significant events, however, hasn’t gotten much notice. In 1968 a group of doctors and other health experts was assembled and given the cumbersome name of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death. They were responding to advances in both medical resuscitation and transplant surgery, which created a need for donor organs. In August 1968, the committee released a report that would lead to the rethinking of our very ideas of life and death.

The Harvard brain death committee defined death as the state of “irreversible coma” and provided three criteria, now familiar to many of us, to guide physicians in identifying it. Three strikes and you were out.

This view eventually came to dominate the view of the medical community at large and eventually of every state in the union, with the exceptions of New Jersey and some hospitals in New York City, which respect a religious exception invoked almost exclusively by Orthodox Jews.

This well-meaning shift, designed to save people who need life-saving transplants, ended up having consequences that few anticipated at the time and are not well understood even today.

Someone who does understand is Princeton philosopher Peter Singer. In a seminal 1996 book titled “Rethinking Life and Death,” he demonstrated that considering brain death as death has put us on a completely new path.

Someone who is brain-dead is a living, breathing member of our species. She can fight off infections, react to her environment (including bodily trauma) and even gestate and give birth to a perfectly healthy baby.

It is absurd to the consider the human body dead when it can do all these things; it means a person must be something other than a living fellow member of our species.

This “collapse of our traditional ethics,” according to Singer, opened the door for us to consider other Homo sapiens who are not rational or self-aware as non-persons: early- and late-term fetuses, humans in a persistent vegetative state and those with severe dementia.

Singer lamented his own weakness in spending resources on his mother who, due to late-stage Alzheimer’s disease, lost her self-awareness. Objectively, in his view, it would have been better to spend such resources on a living human being who was — unlike his mother — a person.

Members of the Harvard Brain Death Committee certainly didn’t intend to undermine the social equality of, among others, the 6 million Americans who currently have Alzheimer’s disease. They only wanted to save lives. By irresponsibly plowing ahead on a matter of fundamental ethical concern, however, they lost the chance to anticipate the bad results of their good intentions.

Fifty years later, Harvard Medical School finds itself in a similar situation.

A hand replaces part of a DNA molecule in a conceptual rendering of genetic engineering and gene manipulation. Image via Shutterstock

Despite a strong international norm against the practice, Chinese scientist He Jiankui recently claimed, via YouTube, that he is the first to use CRISPR, a technique for altering DNA within cells, to edit the genes of human embryos and successfully bring them to birth.

Responses to this news have been almost universally negative. The National Institutes of Health reiterated its opposition to gene editing and found He’s reasoning “utterly unconvincing.” Renowed bioethicist Art Caplan, who is not opposed to gene editing, referred to He as a “moral idiot.” Even aggressive defenders of gene editing like Oxford’s Julian Savulescu said, “It is too early.”

One major voice, however, did not react negatively — that of Harvard Medical School. Reporting from the Genome Editing Summit in Hong Kong on Wednesday (Nov. 28), Antonio Regalado of MIT Technology Review tweeted that George Daley, dean of the medical school, said in a speech that Harvard is “ready” for “responsible” clinical use of embryo gene editing. According to Regalado, Daley wanted us to “stop debating ethics” and “start talking about the pathway forward.”

Daley’s primary complaint with He’s experiment appears to be that, by moving ahead precipitously, he could give gene editing a bad name.

Once again, Harvard is suggesting we capitalize on newly available medical techniques in the name of doing good (saving children from genetic diseases) without thinking through the implications.

We may not be able to anticipate how gene editing may fundamentally change our reality, but at the very least we should dwell — long and hard — on the following questions before going forward:

Can we determine whether the risk to the child is substantial enough to try editing? He Jiankui thought the children’s father having HIV was enough, but Savulescu strongly disagreed and the NIH found it utterly unconvincing.

Can we be sure that the gene editing will focus on mitigating genetic disease and not on enhancement? Savulescu is a strong proponent of trying to make human beings smarter, happier, etc., via gene editing. In a culture dominated by procreative liberty, how can we tell parents they cannot “give their child a better future” via this intervention?

If gene editing is available only to those who can afford it, won’t this exacerbate the gap between rich and poor? What are the social justice implications of taking this step?

How will this practice affect our view of disabled populations and their parents? Will parents who choose not to edit their embryos be looked at as cruel and inhumane? Will the disabled — who might have been “cured” via gene editing — be pushed to the margins of the culture?

Will medical systems — especially those that have to make hard decisions about allocation of resources — pay to take care of these populations? Will the decisions of such medical systems coerce parents to edit their children’s genes?

Will this decision push in vitro fertilization to become the normative way human beings reproduce? Will parents who procreate the old-fashioned way be considered irresponsible? What are the implications of going from procreation as the result of a relationship between two people to a technocratic process, with quality control, in a laboratory?

Until we have clear answers to these questions, we should refuse to edit human embryos. Let medicine learn from its past. What may look like a simple move in the search of a good outcome — when the moral stakes are so high — will almost certainly have profound unintended consequences.

And this demands patience and cooler heads than those currently leading Harvard Medical School.

(Charles C. Camosy is associate professor of theological and social ethics at Fordham University and author of “Beyond the Abortion Wars.” The views expressed in this commentary do not necessarily reflect those of Religion News Service.)

About the author

Charles C. Camosy

Charlie Camosy, though a native of very rural Wisconsin, has spent more than the last decade as a professor of theological and social ethics at Fordham University. He is the author of five books, including, most recently, "Resisting Throwaway Culture." He is the father of four children, three of whom were adopted from the Philippines.

10 Comments

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  • Reading this column by the always-thoughtful Dr. Camosy reminded me of William F. Buckley’s famous quote that “A conservative is someone who stands athwart history, yelling Stop!” Dr. Camosy raises some serious issues that deserve thoughtful consideration. Since the subject of gene-editing is way above my head I can’t really offer any opinions about it other than to say: proceed with caution, which is basically what Camosy is saying in this article. But I would add, proceed nonetheless.

  • “This “collapse of our traditional ethics,” according to Singer, opened the door for us to consider other Homo sapiens who are not rational or self-aware as non-persons: early- and late-term fetuses, humans in a persistent vegetative state and those with severe dementia.”

    Ugh, I was waiting for the Catholic Dogma nonsense to raise its ugly head here. I guess we had to wait for it a bit longer than usual from a Charles Camosy article. They have been on the wrong side of all of those issues (late term abortion and end of life treatment). In all such instances the Church takes a position regardless of notions of consent or personhood of those on the receiving end of medical care in a purely arbitrary way.

    There is nothing unethical about terminating a pregnancy for purely medical reasons, nor people consenting to end their lives. Nor is in vitro fertilization a moral issue either.

    Mr. Camosy raises some interesting questions here. But unfortunately he already has a pre-determined answer in mind and seems more intent on reinforcing the Catholic Church’s arbitrary views of such issues than exploring the real ethics and morals involved with such developments.

    There is a far better reason to oppose gene editing right now for humans. It hasn’t been fully tested nor its effects entirely documented elsewhere. In the future it could be as much a part of normal run of the mill medicine as vaccines or radiological diagnostics.

    BTW at this point there is a reason to believe the story in China is a hoax. There has been no papers published on the efforts nor has alleged data on the procedures been released to outside scrutiny.

  • Mr. Camosy raises some interesting questions here. But unfortunately he already has a pre-determined answer in mind and seems more intent on reinforcing the Catholic Church’s arbitrary views of such issues than exploring the real ethics and morals involved with such developments.

    I have to agree with that assessment, which is why I would proceed with research in this area whereas Camosy would yell Stop!

  • Gene-edited embryos are a terrible idea because of human nature, which tends toward self-serving behavior. If an otherwise benign technological or scientific advancement can be abused, at some point it will be.

    When the subject is human life, that’s too dangerous to consider.

  • Then there’s the other approach: sometimes it’s worth taking a risk. You know what they say, “the greater the risk, the greater the reward.”

  • If people choose to take risks with their own lives, that’s one thing. This is something else altogether.

  • “By irresponsibly plowing ahead on a matter of fundamental ethical concern, however, they lost the chance to anticipate the bad results of their good intentions.”

    I think what is true is that it is not possible to anticipate all the bad results. If we wait until everything is perfectly understood – no change will ever happen. It is true that new medical knowledge and techniques made it possible to prolong life, resuscitate someone who earlier would just be … what do we say … permanently dead rather than just temporarily dead? And, we learned we could use the organs of one person to save the life of another. We could do much good.

    BUT, we could not anticipate the moral dilemmas we now confront without taking steps along the way to bring us to this point. Who would have thought that in 2018 we would be having furious debates about assisted suicide for terminally ill people? And if we had anticipated it back in 1968, could we have come to some kind of conclusion, some answer universally applicable everywhere in all circumstances? I hope not because I think assisted suicide is a gift to some even if it is a curse to others.

    Admit this is scary stuff and Camosy is right to bring up lots of warnings and questions. But Camosy is the naysayer without answers. He has no answers even for the ethically/morally confusing outcomes of the decision made in 1968. When will it ever be “yes?”

    The way we begin to make progress in examining these huge philosophical, ethical, religious, moral, social, psychological, … issues is when someone breaks the rules or agitates to change the rules. We can’t understand or anticipate all the consequences of change until we begin to experience the application of change. And learn from our mistakes.

    I appreciate the warnings and the questions raised. Now, where are some answers about how to move forward?

  • Wasn’t “If we wait until everything is perfectly understood – no change will ever happen.” stenciled on the first atomic bomb that was dropped on Hiroshima?

  • I don’t know if my life would have been better if my, thanks to Nobel Prize winning research, well treated genetic disease had been “edited out” when I was an embryo, but without that insidious onset, fatiguing genetic boat anchor, it might have been.

    On the other hand, it’s left me with time to read and think, for which I”m grateful.

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