Welcome to the age of swipe and select embryos

Prospective parents now have the option to pay for full-genome sequencing to decide which of their embryos go to term, and which do not

Image: MidJourney

Designer babies have been the darlings of sci-fi novels and movies — usually dystopian ones — for decades. But with advances in embryonic whole genome sequencing, reality is rapidly catching up with fiction. As it does, the moral landscape around what is possible versus what is acceptable is rapidly shifting.

Last December, the San Francisco-based company Orchid launched a commercial service for testing embryos for the likelihood of developing various health conditions. The primary target is prospective parents undergoing in vitro fertilization treatment, but the aim is for this to become normal for anyone contemplating having a child.

Preimplantation genetic testing of embryos, or PGT, is not a new technology. What makes Orchid different though is that their technique is based on whole genome sequencing rather than focusing on a small number of specific genetic markers. Because of this, prospective parents using the service have the ability to to select their embryo of choice based on a bewildering number of heath-related genetic traits — far more than are possible using more conventional approaches.

If this makes you feel a little uneasy, you’re not alone. In talking with people about Orchid’s business, phrases like “designer babies” and “eugenics” come up in conversation remarkably fast. And yet the ethical landscape around Orchid and its technology is far from black and white — and is one that is as much about the aspirations driving the technology and the choices that it’s opening up as it is about the line between “can” and “should.”

Is having healthy babies a moral imperative?

This approach to whole genome embryo screening comes out very clearly in a recent interview in Wired with Orchid’s founder Noor Siddiqui. Siddiqui is clearly driven by a vision of creating a healthier world by tackling problems of gene-mediated ill health at source — in other words, just after conception.

She argues that, if we could preferentially select embryos that have a greater chance of developing into healthy adults who live long, healthy lives, we have a moral obligation to do this. Why bring someone into the world who is going to have a life of suffering when this could be avoided with a simple test before an embryo develops into a fetus? And what could the moral argument possibly be for increasing human suffering — and all the knock-on impacts this comes with — when we have in our hands the keys to reducing this?

I’m paraphrasing here, but these are arguments that have a sizable following, especially amongst those who believe humanity has a moral imperative to leverage science and technology to fully support human flourishing in a technologically advanced future.

I must confess that I struggle with how deterministic arguments like these are — it feels like they boil human flourishing down to a balance sheet that jeopardizes the essence of what it means to be human for a few key performance indicators. They also risk problematizing the very essence of what makes us human to the extent that I fear fixing perceived problems will somehow diminish what it means to be human.

At the same time, I cannot say with any certainty that I am right here, and that those embracing the opportunity to begin loosening the shackles of our evolutionary heritage are not.

And this is what, to me, makes Orchid’s technology and business approach simultaneously intriguing and challenging.

The challenges and opportunities of choice

Orchid’s Embryo service is an add-on to in vitro fertilization. In other words, this is not a technology that encourages off-the-cuff decisions about the genetic makeup of your child. Rather, it offers prospective parents the opportunity of informed choice in a process that is emotionally and physically challenging, and that inevitably leads to someone having to make a decision anyway about which embryos to implant.

I would be the first to agree that there are strong arguments to be made for having as much information as possible in deciding which embryo out of several to try and take to term if you are undergoing IVF treatment. Once the decision has been made to harvest eggs and fertilize them ex utero, identifying the one most likely not to be rejected or develop complications after being transferred to the womb is well-aligned with the ethical principles of doing good, doing no harm, and freedom of choice.

At this point, the health of both mother and fetus/child are at risk if a poor decision is made. And while selecting at random is an option, it’s questionable just how ethical this is if information exists (or is readily obtainable) that could lead to a more informed decision.

Basic genetic screening to support embryo selection choices has been available for some years now. Using preimplantation genetic testing, or PGT, embryos can be checked for genetic abnormalities that would prevent pregnancy or lead to spontaneous abortion, or that have a high probability of diseases developing such as Huntingdon’s disease, cystic fibrosis, or Down syndrome.

I suspect most people would agree that such testing makes sense, and that it would be irresponsible to risk mother and child’s heath by not using it where available. But what happens when the number of possible health outcomes is expanded from a small handful to thousands?

This is exactly what Orchid is doing. The profiling used by the company includes a list of over 1,000 conditions associated with single genes, and many that are related to clusters of multiple genes. These range from “intellectual disability,” autism spectrum disorders, and cancers such as breast, pancreatic and prostate cancer, to diseases such as type I and type II diabetes, Alzheimer’s, and celiac disease. And these barely scratch the surface of the potential outcomes that Orchid screens for.

In each case, the claim is that certain genetic profiles are associated with an elevated probability (but not certainty) of specific conditions arising over a person’s lifetime.

Current uses of PGT during IVF treatment allow parents to make tough decisions based on debilitating and potentially fatal health outcomes. But what happens when the list of possible outcomes is extended to those that are less debilitating, that are socially complex, and that some people would see as part of someone’s identity rather than a problem to be solved?

For instance, how does screening for serious genetic abnormalities compare to screening for potential hearing loss at some point in a person’s life? Or how does screening for Down syndrome compare to the possibility of a child being on the autistic spectrum?

This is where both the sheer number of potential health outcomes and their severity and societal relevance threaten to throw a moral wrench into the embryo selection process. Orchid would argue that, to the contrary, this provides prospective parents with more choice and, with appropriate counseling, less anxiety over their choices. But should an embryo be discarded if there’s a chance of it leading to an adult who may develop type II diabetes? And how, as a prospective parent, do you chose between the possibility of your child developing cancer later in life versus having celiac disease?

The combinations and permutations here are vast. And I worry that parents-to-be are being forced into a state of painful knowledge where ignorance might have been better, or are being set up for later challenges as the consequences of their choices play out.

Of course, Orchid may be using a counseling and decision-making regimen that counters my concerns. That said, it would be good to gain greater insight into both the short and long term impacts on patient mental health here.

On the other hand, there is the argument that if it is possible to prevent future suffering based on available data, it is morally negligent not to use these data. This is certainly an argument that aligns with Orchid’s mission, although it does of course depend on who gets to decide what suffering means in this context, and to whom.

My sense is that we haven’t even begun to seriously unpack the ethical and societal ramifications of this level of pre-fetal choice. We don’t know how the burden of choice will impact parents in the long term. We don’t know how it will influence how they raise their child, and their expectations for them. And we have no idea how this will impact the resulting child’s — and subsequent teenager and adult’s — sense of self and autonomy.

It’s also unclear how this level of choice will impact how, as a society, we perceive people with a range of health conditions and disabilities. If Orchid parents swipe past an embryo that has an increased chance of hearing or eyesight impairment, what does that tell us about the perceived “validity” of the hearing and sight-impaired. If they discard an embryo that’s indicated to be the precursor to a neurodivergent child, what does that say about neurodivergence in society. And if the embryo selected ends up with traits that other embryos were deselected for, how will that play out?

It’s the implications of complex choices driven by knowledge that, once known isn’t unknowable, that worry me here. But these aren’t my only concerns.

The full genome pre-screening elephant in the room

With full genome sequencing (over 99% to be more precise), it isn’t just health-related traits that Orchid potentially has access to. In principle, the company could screen for any trait which is associated with single genes or patterns of genes. And while there are a lot of human traits that we cannot link to our genes with any confidence , the use of artificial intelligence to interpret the genome could be a game changer here — at least in some cases.

To be vey clear, non health-related screening is not something that Orchid does. But the company could. And this raises a rather large moral conundrum.

What happens, for instance, when a rich client is willing to pay millions of dollars for screening predictions that go far beyond health-related possibilities? Or future business pressures force the company to expand its model and extract yet more value from the data being collecting?

And how are things likely to play out as competitors using similar technology begin looking for an edge in a crowded market?

These possibilities are both technologically feasible and economically plausible — and they present a challenge to current societal norms that will be hard to avoid.

It doesn’t stop here though. Most parents undergoing IVF do so because of difficulties in conceiving naturally. Here, genetic pre-screening is an add-on that increases the chances of a successful pregnancy while allowing parents to screen for potentially debilitating health issues. But Orchid’s vision goes far beyond parents who have little choice but to consider IVF.

Orchid’s tagline is “Have healthy babies.” Their target audience is any parent — not just those struggling with infertility — and especially those “looking to use the most advanced genetic testing option available, or are otherwise concerned about neurodevelopmental disorders, pediatric cancers, and/or birth defects.”

And their number one guiding principle? “Everyone wants better health for their families.”

In other words, the moral driver behind the company is helping any parents who want the best for their children.

Underlining this, company founder Noor Siddiqui is using the technology herself, despite being perfectly fertile.

This is where Orchid is signaling a shift from genetic pre-screening as a select service for parents struggling to conceive, to something that anyone can, in principle, use. There’s even an undercurrent here that, in the future, it could be considered unethical not to pre-screen — although I suspect that this particular strand of future-thinking will run up against some heavy opposition from some quarters.

Despite this, we are moving toward a future where swipe and select embryo screening becomes commonplace. And as it does, the ethics of pre-screening will be driven by the ethics of choice. When it’s possible to access massive amounts of data to guide decisions, what are the ethics of ignoring this versus not? And if you don’t ignore it, what are the ethical implications of the choices that are subsequently made?

Navigating the embryo screening landscape

It’s easy to dismiss what Orchid and its supporters are pushing for as “unnatural,” “eroding part of the essence of what makes us who we are,” and a “dangerous Silicon Valley tech-bro fantasy.” But to do so would be lazy and narrow minded.

There are certainly serious societal and ethical challenges with whole genome embryo screening. And the philosophy underlying Orchid’s vision does, I admit, worry me. There are quite profound questions here around the ability to decide the genetic traits of future generations, and these only get more fraught when economic and geopolitical drivers potentially fuel a race toward genetic determinism at any cost.

Imagine, for instance, China adopting whole genome embryo screening as a way to increase long-term global power and influence.

There are also substantial equity issues at stake with who gets to benefit from the technology and who does not. Orchid currently has a philanthropic program to make its services as accessible as possible, which is laudable. (Without additional support, screening is $2500 per embryo on top of IVF costs). But for those whose beliefs don’t align with Orchid’s, or who are on the margins of society, or who can barely afford to feed themselves — never mind pay for expensive treatments, or even those who are deemed “inappropriate,” reaping the benefits of whole genome embryo screening is likely to be hard to impossible.

This wouldn’t be such an issue if screening wasn’t likely to confer a social and economic advantage on its beneficiaries. But if it does, the technology could seriously exacerbate inequities within society.

However there is a counterbalance to such concerns — and that is the equally substantial set of unknowns around potentially adverse outcomes from widespread use of whole genome embryo screening.

While pre-selecting for positive health traits sounds positive in principle, there is next to nothing known about potential societal outcomes that may not be quite so positive. These include possible relational and psychological impacts of being the product of a pre-selection program, and the parental expectations and pressures that are likely to come from this. There are also broader questions around the importance of diversity and random variation within human society, especially if we have an evolved resilience as a species that is somehow connected with maintaining diversity along many different axes.

There’s also the chance of a backlash against the technology that leads to discrimination against people resulting from a pre-selection program — a remote but plausible outcome where what looks like a technology-driven advantage becomes a social disadvantage that lasts a lifetime.

As with many other advanced technologies, we’re engaged in a natural experiment with full genome embryo screening where we cannot put the genie back in the bottle, emerging capabilities challenge existing norms, and there’s the potential of substantial benefits and serious risks.

I worry about the social and ethical risks. A lot. But I also respect what Siddiqui and Orchid are trying to do. And I fear that neither demonizing them or raising them, god-like, on a pedestal, will help navigate the convoluted moral maze that increasingly powerful gene sequencing capabilities are leading us into.

Rather, there has to be hard but respectful dialogue around whole genome embryo screening. This needs to allow voices to be heard, opinions to be modified, and pathways forward to be identified, that support creating a positive future together — even though it may be one that looks and feels very different from the past.