An ethical maze: Designing babies for a greater good?

“At ten months old, we were told he would need a heart transplant. There was no cure for his condition, so we would have to go to Great Ormond Street Children’s Hospital at some point. If they had a bed. And a heart. And agreed to the procedure.”

Great Ormond Street, the famous children’s hospital in London, no longer treats restrictive cardiomyopathy. Helen, her partner Tim, and their little son Sam started their long and torturous journey—involving induced comas, Berlin Heart machines, blood transfusions, ECGs, and all manner of other trials and tribulations—toward getting Sam a new heart.

When Sam was sixteen months old, he received a heart transplant. The good news is that the procedure, though fraught with complications (the donor heart itself had defects and ended up being the first heart transplant of its kind anywhere in the world), was a success. The bad news is that transplant recipients usually have a life expectancy of only a further 15 years.

That sort of thing can really play on your mind.

Sam’s life is now a daily challenge both for him and his parents, with kidney problems resulting from the post-transplant drugs, and other conditions to boot. You can throw in two years of COVID isolation for good measure.

The added weight on Helen’s already overburdened shoulders, she told me, was what she thought concerning decisions over a second child. What were the chances of giving birth to another baby with a life-limiting condition? What considerations should she have taken into account the first time?

What could she and Tim have actually done about it?

The hypotheticals turned all too real when Helen learned she was pregnant again.“What are the odds that this baby will have the same condition?” she asked the consultant doctor.

“The best odds I can give you,” he said, “are 50-50.”

CRISPR babies

“The power to control our species’ genetic future is awesome and terrifying,” writes Nobel laureate Jennifer Doudna in A Crack in Creation: Gene Editing and the Unthinkable Power to Control Evolution. “Deciding how to handle it may be the biggest challenge we have ever faced.” The World Health Organization seem to agree, recommending in 2021 that global standards be adopted concerning the ability to edit genes or, in common parlance, to play God.

This was largely provoked by the 2018 actions of Chinese biophysics researcher He Jiankui, who announced the births of twin girls with edited genomes using a process called Clustered Regularly Interspaced Short Palindromic Repeats (CRISPR). The father was HIV-positive, and He Jiankui had edited the embryos’ genomes to remove a gene, conferring genetic resistance to HIV—a procedure in stark violation of international protocols and possibly Chinese law.

As a result, he was thoroughly investigated, leaving him censured, fired from his university, and criminally charged, with ramifications for his advisors in a number of institutions around the world.

On December 30, 2019, shortly after being named one of TIME’s 100 Most Influential People of 2019, He was sentenced to 18 months in prison.

The whole episode is a bioethicist’s nightmare. Or a dream come true, depending on how they see their work.

We mere laypeople have many questions. Should we be able to design babies? Interfere with their genetic blueprint, change the plans, and produce an “artificial” baby? Is it ”natural” to do so? How about more cosmetic traits?

Don’t we already do this?

Genetic modification of living organisms is already a widespread practice in the form of genetically modified crops, one attended by raging controversy. If even the modification of wheat and vegetable genomes produces a firestorm, the modification of human infants naturally generates exponentially more heat.

Or so you might think. Although the process may sound incredibly controversial, certain forms of human gene editing enjoy widespread popular support. YouGov has been surveying British adults on this for some time, with as much as 83% of respondents supporting gene editing in babies to prevent passing on hereditary genetic disorders.

Often, it becomes an argument of science vs. ideology, but in a fight that should be refereed by philosophy.

Let’s rewind further. The artificial selection process of farming has, for millennia, been selecting for genes. Over time, the genetic blueprint for a given crop or livestock has been intentionally altered. This wheat is hardier and that cow is larger or produces more milk because of the way farmers have selected and reproduced their crops or livestock. Farming is genetic modification at a slower pace.

In modern times, genetically modified organisms (GMOs) represent a process that is much quicker and more targeted. Rather than breeding this pig with that pig to make a larger pig as offspring, we can alter the genetic code for pig size, in simple terms. The same principle applies to crops.

The arguments for and against GMOs are well-used, slung like manure across the boundary fences of farming.

Arguing in the affirmative, GMOs can help us feed the world more efficiently, with less wastage or water usage, less pesticide use, greater taste and health components, and so on. This is no small matter when we are trying to feed over seven billion people, many looking to developed nations to emulate their consumption habits. Houston, we have a problem, and it’s not up here, it’s down there.

Arguing in the negative, there are claims that GMOs entail environmental risks (crops naturally cross-pollinate, and these organisms have taken millions of years to evolve the way they have), big agri-business is even better able to dominate as they control the science, and even that “natural is better.” Remember when they told us tobacco was harmless?

I don’t find the anti-GMO arguments particularly compelling. I think the science is in, and we certainly need the science in our modern world, one beset by complex global problems.

“It’s not natural!”

Before we return to the gene editing of future human beings, let’s play around with some more ideas.

For starters, we arguably undergo selective gene modification already.

It’s sex, baby. It’s what we do. Well, if we’re lucky.

More of life is about sex selection than you might think. Buying this fancy car, wearing those fancy clothes, going down to the gym. We are peacocks in human suits. “I’m not attracted to this person” is arguably shorthand for, “There is some genetic blueprint shortcoming in this person,” and the converse applies as well. This has outcomes and ramifications with regard to offspring.

We also have IVF (in vitro fertilization) through which we can mess around with the “natural” processes of life that have come about from natural evolution. Certain people are unable to make babies in the standard fashion, so we give them a helping hand. This is made all the more germane to this debate when you can (and people do) implant several eggs and have them biopsied to test for cystic fibrosis (for example)—a genetic condition that requires the sufferer to have intensive daily treatments while halving their life expectancy—selecting the healthier ones and deselecting those with the unfortunate mutations.

Indeed, while I am on the subject of “natural”: all medicine is in some sense “unnatural,” and messing around with “how things should be.”

But when we see a monkey using a tool, we don’t say that is “unnatural.” This is a telling departure. We are no less natural than the monkey, so you could quite rationally argue that everything we do is natural—every tool we create and use and every outcome of that use. There is arguably no such thing as “unnatural.”

It smacks of double standards to say that “GMOs are unnatural” while driving around in your car, talking on your hands-free device, after taking a bunch of paracetamols for the headache you have from celebrating the birth of your IVF twins the night before, hoping none of this affects the pacemaker you have keeping you alive, compensating for the weak heart you naturally inherited from one of your parents.

You could quite rationally argue that everything we do is natural—every tool we create and use and every outcome of that use. There is arguably no such thing as “unnatural.”

Life is complicated. Philosophy more so.

Playing God

And talking of philosophy, why not talk about God? Many people throw around the idea that messing around with genes is “playing God,” implying we shouldn’t do that.

Whether or not God exists (Author’s note: he doesn’t), I would argue that “playing God” is largely used as synonymous with “it’s unnatural.” “God” represents “natural” or “how things should be,” and “playing God” is the antithesis of this. Of course, there is no “how things should be” unless you can argue for it on rational and moral grounds. This is indicative of the naturalistic fallacy — this is how it is, how nature has it, so this is how it should be.

In that case, have your way, malaria. And while we’re at it, leave cancer be. It’s only natural. As is any errant but natural human behavior.

Of course, this is one step away from social Darwinism. Last time that was advocated, it didn’t end well.

So let’s not consider God, or even how things should be, where “should” is some incoherent idea of some perfect natural order. Instead, let’s talk about how things should be due to a justified rational moral position or argument.

In other words, let’s apply some moral philosophy.

Human exceptionalism

If you are someone who has no problem with gene-editing bulgur wheat or a Black Angus cow but balk at the idea of doing so for humans, beware of your prejudice. Are you being speciesist? Are you saying that it is fine to redraw the genetic blueprint for a cow but not for a human? How dare you!

Surely there is some characteristic of humanity, some trait that puts us at the apex of the natural world, that means we can edit every other organism, just not ourselves, right?

There are many problems with this: What defines a human? What traits are those responsible for qualifying us as human and exceptional? Is it our rationality? Personhood? Why choose such-and-such trait and not the ability to breathe underwater, or photosynthesize?

The human exceptionalism argument is problematic from a number of different angles, not least the idea that the lines of demarcation are pretty arbitrary. Traits from language to tool use to the ability to mark time and engage in introspection have been asserted as markers of human specialness—and soundly destroyed in turn.

There is a more convincing case to be made that if you can edit the genes for a tomato or a pig, then you can do it for a human. You can also make arguments against this, it’s just that they always have elements of special pleading.

Principle vs. practice

Let us look at the principles of gene editing babies here. What the previous arguments appear to represent is something that is directly transferable to the CRISPR baby context: principle vs. practice.

The principle of messing with the genes of a wheat crop isn’t really that much of an ethical issue, all things remaining equal. If we can control for all other variables, and produce a new strain of wheat that needs slightly less water to grow, then surely this is of net benefit. Indeed, you could probably engineer this in a crop and no one would ever be any the wiser, other than the occasional pleasantly surprised farmer.

But it’s the practice of controlling the variables that often becomes the problem. It’s the unknowns. When making predictions about the future, if there are unknowns plugged into the function machine, there are unknowns that are pumped out.

Garbage in, garbage out.

Similar arguments have been made for equally controversial things. Take profiling. Arguments can be made that there are no problems with it in principle. After all, profiling is used to fund schools in the UK. For example, free school meals funding—extra money for schools for each pupil from a poorer background—is meted out to those schools so that they can have extra resources to deal with children who are predicted to have greater educational needs. “You’re from a poorer background, so you are statistically more likely to struggle with this or that aspect of education.” This is social profiling. And it works in this context, by and large.

But in other contexts, profiling can in practice have disastrous consequences. Because in practice, humans are, well, human. We are prone to poor judgment, irrational behavior, and making the wrong choices. We are prone to using otherwise morally neutral things for nefarious ends, whether by mistake or by intention. And that is why profiling is seen, rightfully, as highly controversial in many contexts. The process is abused and becomes counterproductive. When making the utilitarian moral calculation—does the process bring about a greater net good or not?—many claim, with good reason, that profiling does more harm than good.

The way I see this—and please feel free to disagree in the comments, for we are fostering a freethought community here, after all—there is nothing in principle wrong with gene-editing blastocysts or future human beings.

Let’s spin a hypothetical. Jake and Leanne are in a loving relationship and desperately want a child together. However, they are made aware that their genetic unison will certainly create a child with a rare condition that will cause them to die soon after birth. This is, sadly, as good a prediction as we could ever make.

But with advances in science, we could edit the culprit gene (itself a necessary result of naturally combining parental genes) that would otherwise cause the baby to die shortly after childbirth. The process is harmless—an injection into the blastocyst or something similar to “correct” the genetic code that will allow the child to live.

If I was Jake or Leanne, I would advocate for this.

I don’t have a problem, in this one particular instance, with editing the genetic code for the benefit of everyone. It will literally be lifesaving. We would have carried out a minor procedure for a greater good. It’s an easy moral calculation, right?

In principle.

Moral clarity: Helen’s story

The previous example was made up. This one isn’t.

Let me return to my very real friend Helen. Having explained the medical history of her son Sam, and after composing herself, Helen talked about her options.

“We were offered genetic testing, but we didn’t take it,” she said. “It wouldn’t have made any difference to me. I didn’t want to know that I might have to go through it all again. I don’t know if I could have dealt with that.”

If Helen had known about any genetic issues with her second pregnancy, her options would have been limited due to where we are in terms of bioethics, science, and health services. Her choice was between keeping or terminating the baby. There was no third option.

But what if action could have been taken prior to conception, or in utero, at a genetic level? Helen has thought a lot about this.

I asked her the obvious hypothetical: “Imagine you knew your second baby was guaranteed the same condition as your first. If they could have gene-edited your second baby to prevent this, would you have done so?”

There was no delay in her answer. “Yes. Yes. Absolutely. Because I wouldn’t, I couldn’t let anyone else go through what I had seen another human being go through, knowing that there was something I could do to either stop it, slow it, or change it.”

We discussed where she would draw the line, from eye color to the most serious, life-threatening condition. “And things like autism,” she added. “If there was gene editing for autism, would you…that is possibly taking things too far, because they live and they can have a good quality of life.”

“Imagine you knew your second baby was guaranteed the same condition as your first. If they could have gene-edited your second baby to prevent this, would you have done so?”

There was no delay in her answer.

Both of Helen’s children are autistic, so she is in a position of understanding here. Where would she draw that line of improving someone’s future life?

“It goes round and round in my head an awful lot—where you would draw the line–and I’m just not sure. I’m always trying to empathize with people, and imagining if I was in their position. Yet I can’t draw a comparison between my experiences and someone who I think has a lesser experience of looking after a child with life-limiting, life-threatening illnesses like I do—but someone who has a child that has their own difficulties. They’re finding it equally as difficult as I am, though. Who am I to judge their situation? It’s really hard. I’m almost in the wrong position to be thinking about it.”

For me as a philosopher, this is fascinating (though emotionally and morally difficult) terrain.

Experience is relative. What Helen is saying is that her feeling of stress, anxiety, and turmoil may objectively rate as a 90% challenge to her life, and also feel to her like 90%. Someone else who has a less problematic scenario of 60%, though, may still feel and experience their scenario as if it is the same 90% Helen feels.

Perhaps the decision, then, isn’t about the experiences of the parents and other people involved, but about the future child.

And we get back to “life-threatening” as a criterion for drawing that line. But even that can be open to debate over scale and probability.

Philosophy is tough. Life is tougher.

(And I won’t include the conversation we had about the people who tritely say, “Everything happens for a reason,” or who invoke God. There were too many expletives. Suffice to say that Helen really wanted someone to explain what that reason might be, and why her child was being used as an instrument of suffering.)

In practice, what could possibly go wrong?

What, then, are the issues with gene editing? What we have is a minor procedure that brings about a greater good, right?

There are two families of problems here. First, the unknowns. What complications might arise from the actual process of editing that gene or sequence of genes?

Second, we have a number of sticking points with regard to the greater good. Who gets to arbitrate what the greater good is? How minor can the greater good be to warrant the procedure? How do you know the greater good will come to pass and how do you know some other complication won’t come to pass (the Law of Unintended Consequences)?

Would we have a scenario where some countries don’t have universal healthcare, and so the decision is one that can be made only by the people with the money to make it? Would this be open season for increasing inequality? The potential problems mount.

Good science

To tackle the unknowns first, this might be a case of accumulating knowledge, doing science. Without getting into the details of how one might go about conducting experiments into the outcomes of gene editing, we might need a whole host of carefully-conducted trials to collect as much data as possible.

When making decisions, it is best to be armed with as much knowledge as possible. Whichever way you argue this, you will need to dip into a reservoir of data.

When GMO crops first arrived on the scene, countries and organizations conducted controlled experiments, looking to minimize cross-pollination. GMOs have since been judged, by scientific organizations such as the Royal Society, to be safe. Is what we have learned from these reports relevant to gene-editing in humans? Could a GMO human “cross-pollinating” with a non-GMO human present any problems?

Our genetic blueprint is complex, and though we have mapped it, it doesn’t mean we understand everything about each gene or sequence, and what the ramifications might be for altering them.

Thus, we need to do science. A lot of serious science. Gene editing is a nascent field, and people around the world are doing this, whether it be stem-cell scientists editing genes in human embryos to learn how cells regulate themselves, or bioethicists specializing in human trials of gene therapies. This work is taking place.

What might be interesting to note, however, is that there are unknowns in any policy-making scenario. It’s only that this scenario involves human genetics. You might say, “So what?” and you could be justified. But if a government or organization makes a decision to enact some policy or other, they will almost always do so with incomplete evidence. In complex systems, there are intended consequences but they often diverge from consequences in practice. At some point, we move from paralysis from fear of unknowns to action.

I don’t think anyone will argue with the idea that we need a whole lot more data, knowledge, and understanding of what the process involves and what actual ramifications it will or might entail. How long is this process and how much data do we need? I am in no position to answer these questions, though I do like to ask them.

The greater good

In our hypothetical case, the greater good was the life of a baby being saved. This might be one of the most obvious wins for such a procedure. On the contrary, we might see people desiring a boy rather than a girl (or vice versa), or eye color, or height, or intelligence, and so on. There is a whole range of desirables we could imagine.

Is this wrong? When I am selecting a partner, am I not in some sense already doing this, selecting for traits?

I might see some aspect of the decision to alter as incredibly important and in some manner “good,” but this evaluation may not be shared by someone else. Who gets to arbitrate the moral value of a given outcome?

But, again, don’t be speciesist, or human exceptionalist, or designer babiesist, because these are the exact same issues as when considering any moral decision or policy.

When an individual, organization, or government is deciding whether to enact a policy (PA) over another (PB), they are evaluating outcomes over a number of areas, using some kind of metric. This will involve looking at a selected range of outcomes (not all outcomes) over a selected range of people (probably not all people) over a selected timeframe (probably not all time, forevermore). PA is preferred to PB because it generates this particular outcome for these particular people over this time period. But if you changed the time period, or the target people, or the outcomes being measured, PB might become preferable.

Who gets to be the arbitrator of these decisions? Who gets to decide the metrics and target variables under consideration?

And that’s ignoring the unknowns, the hidden variables that play merry havoc with predictions.

Drawing a line in the sand

My favorite philosophical thought experiment is The Sorites Paradox.

Imagine a sand dune—a big old heap of sand. You take one grain of sand off. Is it still a sand dune? Well, yeah. Repeat. Is it still a sand dune? Well, yeah. Repeat. A lot.

At no exact point does the sand dune go from “sand dune” to “not a sand dune”: one grain of sand won’t make the difference because the distinction is fuzzy. It becomes a paradox because you eventually get to no grains of sand and you haven’t yet demarcated when the “dune” becomes “not a dune”. “Nothing” is apparently a “sand dune.”

We can apply that to all sorts of things that work on a continuum. This is a problem for demarcating species in evolution, for example. When exactly does a baby become a toddler, a toddler a child, a child an adolescent, an adolescent an adult? We arbitrarily draw lines in the sand. In the US, an adult may be 18 years of age, able to vote and serve in the military but not able to buy alcohol. In other countries, each of those may be set at younger or older ages. Indeed, a particular 17-year-old might be more physically and mentally mature than another 20-year-old, but the latter is an adult and the former not.

Those lines in the sand can be very subjective and often rely on consensus agreement for practical reasons. This is particularly the case with moral reasoning, which is pertinent to the discussion at hand.

Whilst we might accept the case for gene editing such as Helen’s above, we might not accept the case for parents demanding a girl rather than a boy, or blue eyes rather than brown.

But where do we draw the line, how do we rationalize the place it is drawn, and who draws it?

Regulation

There is a big difference between libertarians and faux-libertarians. The latter will hold up a copy of Atlas Shrugged in Congress and then vote for bans on abortion, against gay marriage, and regulate against gender reassignment. In short, many libertarians love to collect up all the regulation they haven’t used on huge corporations, forge an iron cage from it, and throw it over the body of individuals. So you can rest assured that those libertarians would be outlawing any such gene-editing practice…

But sensible regulation is important, isn’t it? And those regulations are built on a firm foundation of years of philosophical discussion, a lot of argument, robust data, good understanding, and a range of expert minds coming together.

Regulating is all about trying to work out what might go wrong, and mitigating against such eventualities. This is where I will end up, after first wondering whether we are ushering in a utopian or a dystopian future.

Transhumanism

We really are entering the realm of what was once science fiction. Transhumanism is the movement devoted to promoting the research and development of robust human-enhancement technologies, one manifestation of this being gene editing. There are people who are genuinely excited by the prospect. Others are genuinely terrified. Who is more justified?

One of the best ways of answering this question is, like a true philosopher, by asking another one:

What’s the worst that could happen?

This is a fascinating question, but one that requires a whole new article. Imagining the worst that could happen allows us to put things in place that prevent exactly that.

So where have we got to?

I may not have given you any definite answers because I don’t have any definite answers. It depends on how the question is framed, how the answers are framed, who’s doing the questioning, and who’s doing the answering.

Someone like Helen feels very strongly about it. In her situation, it would be a no-brainer.

It’s just all those other situations that require a little more thought.

Personally, I’m still sitting on the fence, throwing manure, trying to work out on which side I sit. I think much of it will come down to principle vs. practice, and the one question that I keep coming back to:

What’s the worst that could happen?