[Image by Clker-Free-Vector-Images from Pixabay]

I was having a conversation with a pro-choice friend the other day and the topic of genetic screening came up. Specifically, this very interesting interview that Ross Douthat did with Noor Siddiqui on his podcast Interesting Times. (Anyone can listen to the podcast but you need an NYT subscription to read the transcript.) Siddiqui is the founder of Orchid, a genetic screening company that offers a more comprehensive form of genetic screening for embryos than is generally available. Siddiqui:

We’re the first company in the world that allows parents to actually sequence the entire genome of an embryo, sequencing 99 percent of the bases in an embryo’s genome, which allows parents to detect risks for some of the most serious conditions — heart defects, birth defects, pediatric cancers, developmental disorders — things that massively change the trajectory of a child’s life. And the vast majority of these diseases don’t have cures.

What’s really exciting about this possibility is that now parents have this ability to protect their children from an entire category of disease that previously we had to just hope for the best and wish that our children wouldn’t be affected by them.

Siddiqui’s desire to start a company like this was shaped by her mother’s experience of retinitis pigmentosa, a condition that causes progressive blindness. Siddiqui’s mother started losing her night vision, then her peripheral vision, and finally her central vision started to go. Retinitis pigmentosa is genetic, so Siddiqui writes that once her mother got diagnosed there was an additional level of worry “is that going to affect her siblings, my aunts and uncles? Is it going to affect us, her children?”

Douthat asks her a lot of different questions about the screening: about how it works, about how accurate it’s likely to be, about the cost, about poetic connections between sex and reproduction. But the most interesting part of the interview for my money was the following exchange. Orchid is a test designed to facilitate embryo selection, allowing couples to create a number of different embryos with IVF and then implant the one with the lowest risk of various genetic diseases. Siddiqui is at pains throughout to suggest that the company doesn’t recommend discarding the other embryos, but leaves what happens to them entirely up to the couple. That could be discarding, it could be permanently leaving them frozen, it could be a future implantation. Douthat points out that most people doing IVF and genetic screening currently are opting for the first two options, and that we can reasonably expect this to continue (which Siddiqui also disputes). After a bit of back and forth between them we get this exchange, which I’ll quote at length:

Douthat: I feel like I’d like to know what you think about the moral status of the embryo. Isn’t that something I should be able to know? Just to go back to the example you talked about, with your mother and her illness: In the world you’re describing, your mother would exist as an embryo — not your mother as an adult human being, your mother as an embryo — and someone running an Orchid-style program would look at that embryo and say: We’re not going to implant that embryo.

Does that bother you at all? Would you say: Oh, I’d like to have my mother have a chance at life through some kind of low-probability compassionate injection. Are you comfortable with that embryo being frozen or discarded? What’s your actual view?

Siddiqui: Look, that question has, again, extremely dishonest framing and dichotomous reasoning. Let me just walk you through my grandma’s life situation.

Do you support girls getting the chance to finish high school? Do you support girls getting the chance to choose who they marry and when they marry? Well, my grandma wasn’t ——

Douthat: Someone’s doing some dishonest framing here, but I don’t think it’s me.

Siddiqui: No, I don’t think it’s dishonest framing. That is the actual situation that my grandmother was in. She was married at 16 and had my mom at 17.

Now we’ve progressed as a society, and we give girls the choice to finish high school. We give women the choice to choose when they marry and who they marry, and all of those decisions have profound consequences on who gets born. Different people are getting born because girls are finishing high school. Different people are getting born every time a woman rejects a man on a first date. [Emphasis mine.]

Douthat: I’m not asking about the set of choices that bring embryos into being. I’m asking about the embryos themselves. You are running a business and you are saying: It would be good to live in a society where the embryo that became my mother was assessed and ruled out of bounds.

I’m just asking you what the actual status of that embryo is. Does it matter? If I took the trays of embryos that contain you and your husband’s embryonic children and I threw them in the river, what kind of crime have I committed? Have I committed a property crime? Should I pay a fine? What have I done?

There’s then a discussion where Siddiqui asks Douthat if he wants to ban IVF: he says that he doesn’t but that he’d favour strict limits on the number of embryos created through it. Siddiqui then returns to the question.

Siddiqui: Sure. I think that the question of an embryo that is going to get adult-onset blindness, what do I think about that embryo? My mom doesn’t want to be blind. She doesn’t want me to be blind. She doesn’t want her grandkids to be blind. So I think that it is a positive moral choice, it is the responsible decision as a parent, to detect that risk at the earliest possible stage and to transfer the embryo that has the best probability of a healthy life.

I don’t think that there’s any moral question there. I think almost the opposite. I think that creating stigma or creating some sort of taboo around the idea that parents would want to proactively get that information is a dangerous idea to propagate.

For me personally, I do think every single embryo is precious. I think it’s an absolutely amazing thing that we’re able to make this process work outside of the body. It would be amazing if we had cures for all of these genetic diseases so we didn’t have to make these difficult decisions, but unfortunately, the medicine is just not very good. We do not have cures for these diseases. My mom has no options for being able to reverse the vision loss.

The whole discussion is very much worth your time, though your mileage may vary on how much it adheres to the Minimise standard for conversations (we wouldn’t recommend accusing anyone of dishonest framing, even in response to being accused of dishonest framing!). What’s interesting to me about this bit was that, despite the fact that Siddiqui never clearly answered the question about the embryo’s moral status, there is a fairly clear answer she could have given. She could have said something like “I think the embryo is an amazing thing with non-zero moral weight. But I don’t think it’s got rights or inviolable dignity. I don’t think it has equal moral status to a person.”

I strongly suspect that Siddiqui thinks something like this. If this is what she believes, the rest of what she says actually makes a lot of sense. And it makes sense in a way that reveals that there are two very different sorts of moral question that come up with genetic screening, in a way that sometimes gets obscured by the framing of the question.

It is absolutely true, as Siddiqui says, that different people are conceived when the circumstances of conception are different. If a couple has sex and conceives a child on a Tuesday, that will be a different child to the one they would have conceived if they’d waited to have sex until Thursday. Nobody is killed here, but the child that would have existed had the Tuesday conception happened never comes into being. Nobody (almost nobody) thinks this is a problem though. Why? Because the possibility of a child isn’t a child. There is no being that is wronged by the Tuesday’s child not existing, because Tuesday’s child doesn’t exist! It’s not that there are a bunch of potential people sitting around in the ether waiting to be given bodies, and some get lucky while others don’t. No, the only people who exist are the people who exist. The contingency and randomness involved in any one person’s existence might give us a kind of existential vertigo, but there’s no question of anybody’s rights being violated here.

Now, imagine a couple gets some kind of fertility-related set of scans of their own bodies, and realise that there’s some kind of problem in the man’s sperm. That problem makes it much more likely that any child conceived with this sperm will have retinitis pigmentosa, the progressive blindness condition that Siddiqui’s mother had. Imagine further that the problem it’s confined to one particular set of sperm, all of which will be absorbed back into the body by next Thursday (it’s a very impressive scanner). Some, however, will still be around on Tuesday. Would the couple be acting wrongly in delaying trying to conceive until Thursday to avoid conceiving a child with retinitis pigmentosa?

I don’t think they would. (What would be the wrong action here? *Not* having sex on Tuesday? That’s not wrong. Having sex on Thursday, or any other future day? Hard to see how that’s a problem either. Is it wrong to have any preference about your child’s genetic makeup, or at least to do anything to realise that preference? This would have to be argued for and I’m not sure that a good argument exists.) Perhaps I’m wrong about this though. Perhaps there’s something wrong in their intentions or attitudes. Whether or not that’s the case though, the rightness or wrongness of what they’re doing has absolutely nothing to do with anyone’s right to life. At the moment when the decision is made, there’s nobody around with such a right to be violated.

Now, any pro-lifer is going to think that this is completely different from what Orchid’s genetic screening does. What happens there is that there are a bunch of human beings who already exist (the embryos conceived via IVF) and some of them have the genes which make retinitis pigmentosa more likely. Those embryos would then not be implanted for that reason: and either killed (if ‘discarded’) or subjected to the strange limbo of the freezer with their ultimate fate uncertain but not hopeful. This is eugenics in the most straightforward and objectionable sense: people with genetic conditions or disabilities being killed or discriminated against simply because of those genetic conditions.

But imagine that instead of thinking that people begin to exist at conception, you think they begin to exist somewhat later. On this view the child that an embryo might later become would seem more like Tuesday’s child from the last example. Not something or someone that already exists, but a mere possibility. Not actualising that possibility wouldn’t be violating the rights of any actual child, it would just be choosing not to make a possibility of a child actual. That might raise various moral issues, but it wouldn’t raise ones about killing the disabled. 

That position is I think Noor Siddiqui’s. What’s primarily wrong with it is exactly what’s wrong with the normal pro-choice position: it’s wrong to think that embryos are not our moral equals, that they are not human beings with equal rights. As a result of that error, it ends up licensing the worst kind of old-fashioned eugenics, the lethal purging of the disabled from society. Discarding an embryo after genetic screening is wrong because it’s killing an innocent person.

Convincing Siddiqui of this wouldn’t really involve any special attention to genetic diseases or the question of whether families or societies would be better off with or without them. It would involve making the standard case that the unborn are our equals (bodily rights arguments wouldn’t be relevant here because the whole IVF-screening-discarding process takes place before implantation). If she honestly didn’t believe this (she seems to think that believing embryos have equal rights is some kind of religious position) she wouldn’t think of discarding as killing. Perhaps there would still be something wrong with it, but whatever that was it would be much more complicated.

***

That complexity explains the way that most pro-choice people think about genetic screening. If you don’t think the unborn are our equals, the issue is very complicated.

Sally Phillips’ much-discussed documentary A World Without Down Syndrome is a really excellent, thought-provoking piece of work that I’d recommend to anyone. But I’ve long thought that missing from the discussion is the fact that there are at least three different ways that you could have a world without Down Syndrome.

The first is that some future scientific advance could perhaps identify the pre-conception conditions that lead to the particular chromosomal difference that produces DS. Perhaps it turns out that those conditions are avoidable (maybe there are differences in sperm and egg cells that we haven’t identified yet, or maybe there are environmental conditions that make a difference). Then people decided to use that knowledge to avoid conceiving children who will have DS.

The second one is that they invent a ‘cure’ for Down Syndrome. Imagine that there are a series of injections that you could start giving to babies in utero which would change the way their genetic code expressed itself. The same baby with – for the sake of argument – the same genes (I think gene-editing that left the same baby alive wouldn’t really be any different, but that’s debateable) would lead to different development. Imagine that development mirrored that of a neurotypical person, and the baby never experienced any of the symptoms of DS. If widely adopted enough, this too would produce a world without Down Syndrome, at least as we know it. 

The third is the path that we seem to currently be on. That involves people with Down Syndrome still being conceived, but then being screened out and frozen or discarded as embryos.

To me, all three of these paths to a world without Down Syndrome raise complex moral issues: about ‘playing God’ in approaching human genetic diversity, about the nature of disability. To the extent that a world without Down Syndrome would be bad no matter how it’s produced, it’s because Down Syndrome is not like retinitis pigmentosa: it’s not a neatly isolateable and straightforwardly bad condition which can be separated out leaving the person otherwise unchanged. It’s both more fundamental to a person’s identity, and less like a disease. People with DS generally live very happy lives, arguably happier on average than those of the general population. 

For myself, I don’t really know what to think about the morality of the decisions that might lead to the first and second case. I see reasons that favour both sides. But the third, the actual way that we are moving towards a world with much less people walking around with Down Syndrome, raises issues that the first two don’t. It achieves that world by looking at real, existent disabled human beings, and judging them unfit for life. People with Down Syndrome are increasingly missing from the picture, not because they never existed, but because they are dead.

This is not how most pro-choice people see it. But the reason they don’t see it this way is mostly not because they think having a genetic disability is a good reason to kill a person, but because they don’t think there’s a person there. For the most part, they thought there was a person with Down Syndrome there, they wouldn’t kill them – we can see this by the complete lack of demand for post-birth infanticide of children with disabilities. So I think the best way to stop disability selective abortion is the best way to stop all abortion: change people’s minds about the core issues. As Muireann recently wrote, the abortion debate is pretty limited.

I say ‘mostly’ because I’m not completely sanguine about this. Peter Singer and others who favour post-birth infanticide for the disabled are increasingly influential. I’ve heard, off the record, about cases in Ireland where born children with disabilities are either being softly denied life-saving care, or where the care is only given reluctantly, by medical professionals who seem to think resources would be better directed elsewhere. Because embryos are human beings with equal rights, it’s hard for our attitudes to them not to start bleeding into our attitudes to other humans. Reality is stubborn like that. But for now the idea of killing the disabled outright is thankfully quite marginal: the real challenge is still to convince people that embryo destruction is killing. 

Ben