Editing Our Future

The recent (March 6-8, 2023) meeting of the Third International Summit on Human Genome Editing in London has brought ethical concerns about heritable human genome editing to the forefront once again. Recall that the previous meeting five years ago exploded into international furor over revelations from He Jiankui, the Chinese scientist who edited the genomes of three embryos and brought them to term. He was jailed for his actions in China and was only recently released. Apparently, he is unrepentant and still harboring visions of reactivating his genome editing pursuits. Not surprisingly, the Summit began with scientist Yaojin Peng outlining the plethora of regulations that the Chinese government has enacted in the last five years to safeguard genomic research. Yaojin Peng assured the audience that heritable human genome editing is currently prohibited under criminal law in China. It was politely pointed out by several attendees that for regulations to be useful they actually have to be enforced, and that private research was not governed by these regulations. Geneticist Linda Partridge expressed the thoughts of many: “While the potential benefits of the technology are clear…that doesn\’t mean unscrupulous actors won\’t (misuse) the technology to further their own interests.”

For good reason, caution was a predominant attitude for the 500 plus conference delegates from around the world. Nonetheless, the prevailing opinion seemed to be that the most important ethical issue was safety. Once safety concerns were addressed, use of the gene editing technology could proceed unhindered. One thoughtful bioethicist, Tina Rulli, posited that safety was not the only problem. She suggested that, in addition to safety concerns like off target cuts and mosaicism, there were other serious objections: all alterations, whether ultimately advantageous or detrimental, will affect future generations; there is a slippery slope to the production of designer babies; and the extreme costliness of the procedures prohibits fair access. Moreover, because heritable human genome modification (changing genes in embryos), unlike somatic modification (changing genes in an individual, not heritable), does not cure an existing disease in an existing patient, it is not a medically therapeutic necessity. Taken together, these objections led her to conclude that the harms outweighed the benefits and heritable editing should not be done. Many delegates disagreed, saying that the huge potential for transforming health outweighed concerns and that, in time, the safety concerns would resolve, the technology use would be normalized, and the ethical unease would vanish. Thus, with minimal safeguards in place, this contingent was of the mind that the research should continue apace. The unashamed words of He Jiankui, when asked to comment on his previous research, echoed the latter sentiment. He did not say “I did the wrong thing,” but that “I did it too quickly.”

The presentations and conversations at the Summit were undoubtedly thought-provoking. We can be thankful that, in the end, the conference organizers issued a statement acknowledging that “Heritable human genome editing remains unacceptable at this time.” They did not have the courage to conclude that heritable human genome editing is an event that should never happen. Rather, they encouraged moving forward with somatic modifications, working on safety and efficacy, and continuing to discuss heritable editing with the public until its value is accepted and the concerns resolve.

Their conclusion validates the all too prevalent concept that societal acceptance is equivalent to moral acceptability. Moving toward widespread acceptance, being able to say “everyone is doing it,” is a rather thread-bare justification for moral acceptability, but there is considerable precedent for this view. Consider the history of in vitro fertilization, prenatal genetic diagnosis, and abortion-on-demand. The procedures have undoubtedly become safer and more commonly used over time, but each one of these has raised serious ethical issues beyond safety. The ethical concerns did not go away, but they were not considered reason enough to pause action at an earlier time, and now they are of no consideration at all. Be aware that, despite the soft declaration of these well-meaning scientists, heritable human genome editing will continue to move forward and will gain societal acceptance for all the wrong reasons, moral considerations notwithstanding. The grievance against our generation will be that our quiet acquiescence will affect future generations of human beings who did not consent to be genetically modified, but will be forced to live with the consequences.

The Tennessee Center for Bioethics & Culture encourages respectful discussion and debate of bioethics issues, and strongly supports freedom of speech. To that end, we invite and welcome other voices to the discussion of bioethics issues. Invited authors’ views are their own, and do not necessarily represent those of The Tennessee Center for Bioethics & Culture.