Context Watch: To edit or not to edit? At the brink of newborn genome editing

An issue that will ultimately affect the entire species
Description of human germline editing in words of 18 prominent scientists on pages of Nature journal [more]

We know who speaks for the nations. But who speaks for the human species? Who speaks for Earth?
Carl Sagan

Humans are now closer than ever to conscious engineering of new human beings. Heck, we are after the first try – although not so successful – which gave the first genetically modified newborns in November 2018 [more technical details]. As scientists are starting to heat up debates, form committees, and put pressure on governments, you should also be concerned. This is a game of the highest stakes.

The public generally is not excited about the fact that gene therapies are clinically approved since 2015. The procedures are still far from being conventional, but there is nothing strange in genetic modification of human immune system cells in blood cancers (CAR-T therapy). We don’t really call those patients as “genetically modified humans”. Instead, many prefer a softer “somatic genome editing” (soma – body). We change just a small part of the body, individual cells, not the whole human being.

“Somatic” stands in contrast to “germline“. Human germline editing involves changes of an ovum, a sperm cell or embryo cells. Any modifications are expected to be present in all cells of a human body and therefore definitely fulfill a definition of “genetically engineered human”. What’s more, any changes will be inherited by future generations. And it’s pretty easy to think of not only medical interventions, but also of pure qualitative enhancements (who wouldn’t like to have better memory?). Those changes can (relatively) quickly spread in the whole population, changing whole Homo sapiens species. That’s where most of the controversy lies.

So let’s take a closer look at the headline question in own words of scientists. Below are exact quotes from documents, memos, and publications.

Not to edit		To edit
It is irresponsible at this time for anyone to proceed with clinical applications of human germline genome editing [WHO committee].	<->	There is widespread consensus that we are not yet in the place of safe enough genome editing [Science]. However, there has been already the first experiment with partial success and some off-target effects [more], and there is one company aiming at industry scale germline editing [more].
We call for a global moratorium on all clinical uses of human germline editing. (…) Five years might be appropriate [Nature call].	<->	Moratorium was proven to be ineffective. We don’t need a moratorium [G. Church]. I don’t think a vague moratorium is the answer to what needs to be done [co-chair of WHO committee]. I don’t see the need for, or rationale for, a moratorium. It is a shame that those writing in Nature are forcing the issue to become one of semantics [D. Baltimore].
Determine that there is broad societal consensus in the nation on whether to proceed with human germline editing at all, and on the appropriateness of the proposed application [Nature call].	<->	We enhance the intelligence of our children, we have been doing it for millennia: we educate them. (…) I just don’t think that blue eyes and (an extra) 15 IQ points is really a public health threat, I don’t think it’s a threat to our morality [G. Church].
Many religious groups and others are likely to find the idea of redesigning the fundamental biology of humans morally troubling [Nature call].	<->	We conclude that so long as heritable genome editing interventions are consistent with the welfare of the future person and with social justice and solidarity, they do not contravene any categorical moral prohibition [Nuffield Council on Bioethics].
Unequal access to the technology could increase inequality. Genetic enhancement could even divide humans into subspecies [Nature call].	<->	We propose here a principle of social justice and solidarity to secure that if heritable genome editing technologies are introduced, their use is restricted to cases they should not result in unfair advantage for certain individuals or groups or unfairly disadvantage for others [Nuffield Council on Bioethics].

Those are the views of scientists. Technologically we are not there yet. We will be there probably in the next years, and then… what?

Science of bioethics provides us an interesting framework (which can be presented on a linear scale from no editing to full-scale editing) and clever answers (which can be summarized to lists of arguments).

No editing:

Let’s be clear: an Earth-wide ban on human germline editing is not going to happen. It simply won’t be possible to control every lab in the world. Even in the case of strict law, it still will be evaded, as clearly is happening in the case of limited access to abortion procedures. But we can still consider no editing at all through individual choices. Would you refuse to change the genome of your future child, if you’ve had an opportunity? Possible arguments in favor of full refusal:

Rejection of any kind of human selection (along with pre-implantation screening, for instance), negative connotations with eugenics,
Religious beliefs, considering newborn DNA as the sacrum,
Preference for leaving the accountability for a future human life in the hands of natural recombination,
Avoiding laboratory assisted procedures for natural, pleasant intercourse (it’s a big one on the population scale!),
Simple lack of any suspected inherited disorders, along with disagreement for pure enhancements of the genome.

Medical editing:

This is probably the most common stance: allowing human genome editing for medical purposes. Some people carry genetically inherited diseases, which could be erased through appropriate modification. Although there are already procedures addressing this problem (ovum/sperm donors, adoptions), many people express a deep need for having children biologically related to parents. There is also more subtle spectrum of inherited, medically-significant variants, which can increase the risk of complex diseases like cancer of diabetes, and which also could be corrected before birth. Other arguments for mainly medical human germline modifications:

No objections to laboratory procedures, including highly probable embryo discarding,
Elimination of inherited disorders from the human population, in a way that after a few generations humans there would be significantly lower need for corrections,
Widespread adoption of germline modifications, similar to vaccines,
Legal rules, scientific consensus and/or personal distinction between allowed and not allowed genetic alterations,
Refusing genetic enhancements on any grounds: historical, philosophical, religious, humanistic.

Enhancement:

Permission for unlimited human genome modifications seems radical, but – given the proper technology – probably it will be performed in the future. Humankind has a long history of using new technology in all possible ways (including a war close to humankind extinction, as was in the case of nuclear physics). But on a personal basis, would you go beyond medical corrections, and provide your children with pure genetic enhancements? What would support this, currently extremely unpopular idea?

There might be no cultural difference between giving children the best care, education, wealth, and giving them the best possible genome (as far as it seems, cultural revolutions can happen quite quickly!),
The difference between medical interventions and human enhancements could be vague, and therefore unpractical in the decision-making process (we can think of surprisingly wide “grey area”, including the first edition in the human history, where intended goal was resistance to HIV),
Inevitable division between “better” and “worse” humans (as Hawking put it: “genetic haves and genetic have-nots”) is nothing new in the history of humankind, and most of the world was always behind few/dozen percent of the wealthiest people,
Future generations will need to be better suited for the warmer climate, space flights, biorisk, information overload, etc.,
Opportunistic participation in worldwide enhancement, where not-enhanced children will start from a worse position.

Based mainly on review of Nuffield Council on Bioethics.

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We are not there yet, but inevitably we will be. What side will you choose? What side will choose the humanity?

For sure, we are going to change what is known as Homo sapiens.

It will not be we who reach Alfa Centauri and the other nearby stars. It will be species very like us, but with more of our strengths, and fewer of our weaknesses.
Carl Sagan

Written in April’19. Updated in October’19.