Being Is Greater Than Not Being: A Response to Noor Siddiqui
I was a baby with SMA who never walked. I am an adult with SMA who will always need some type of assistance to live an independent life.
That makes me the answer to a pair of questions posed by Noor Siddiqui, the founder of Orchid, a company that, according to a recent interview in the New York Times, “promises parents the ability to protect their future children through genetic testing for embryos before pregnancy.”
In celebration of the interview’s publication, Siddiqui posted the following on X on August 14:
What if your baby never walks? What if they are never able to live independently? What if you could have stopped it… but chose not to? That’s the question @OrchidInc’s embryo screening forces.
You optimize everything… career, diet, skincare… but you’re going to chance it on your child’s genome, one of the most significant determinants of their health?
The most important parenting decision happens *before* conception.
It’s not the name.
It’s not the school.
It’s *the genome*
That’s the difference between a child who runs and laughs… And one who never walks, never talks, dies at 5.
Most kids are born by accident. And yet we stigmatize parents who plan ahead? Who screen embryos to prevent deadly, (now) preventable diseases? If you wouldn’t screen, fine.
Just be honest: you’re okay with your kid potentially suffering for life so you can feel morally superior… or because you can’t be inconvenienced for 2 weeks to extract eggs and check for genetic issues before they develop
The third question is the crux of the issue. What if you chose not to terminate the life of a child with a genetic, known disability? What would that life be like?
She answers that in the following paragraph. That child’s life would not be optimal.
What then is optimization? That child not existing. Consider Orchid’s model as described in the above interview. To oversimplify the process, many embryos are created at $2500 each through IVF. Genetic samples are taken from each embryo. These small samples are extrapolated in what Siddiqui describes as a reliable process, and I do not know enough about the science to dispute this. From there, the genome is analyzed to calculate the probability of that child developing certain genetic disabilities. Some are straightforward, as they are driven by one gene, whereas others are more complicated, but the general idea is that each embryo is given a risk score. Parents would then choose, presumably, the one or ones with the lowest risk score of developing certain conditions for implantation.
When she talks about optimization, this is not gene therapy. This is not healing a child. This is actively choosing one child not to live and another child to live. In the interview, she emphasizes that Orchid does not dispose of the embryos, and it is the choice of the parents what to do with them. We can see through the euphemisms. Those embryos are going in the trash because of their higher risk score, their perceived undesirability, and a prophesied sub-optimal life living with a disability.
Siddiqui describes her mother having retinitis pigmentosa that led to her progressively losing her vision at a relatively young age. She shares how she hated seeing her mother suffer with that and didn’t want anyone else to suffer from blindness. She is not curing blindness, but she believes she is protecting people from blindness. That is the cruel promise of her technology. She says that she is helping children not live with debilitating conditions, and that sounds like healing. However, if unborn baby Jim has retinitis pigmentosa, unborn baby Jim will never be born because he will not be chosen. This company is not helping people live with debilitating conditions; it is helping them not live at all under the guise of protection.
The sleight-of-hand here is very crafty, but I want to reemphasize this one more time. When asked what Orchid does, Siddiqui says, “What Orchid can do is it gives parents the power to protect their children before pregnancy begins.” Although I would contend that the pregnancy begins at conception, that is not what I want to emphasize right now, although it is a critical point against Orchid’s entire business. Instead, I want to ask who is being protected by this procedure? Not all the children. Not the children who cannot walk or live independently. It sounds so good. Who doesn’t want to protect their children? You are a horrible parent if you do not want to protect your children. However, you have to ask which children are being protected.
In reality, none of the children are being protected. The ones that have genetic abnormalities are being terminated, and the ones with typical genetics are not being helped or protected in any way; they are being chosen, but it is not like their genetic code is being fortified or enhanced in any way to make them any different than they were. Consequently, that termination must be equivalent to protection for her equation even to make sense logically. It is the only action being taken and therefore must be the aforementioned protection. That is a significant and devastating assumption. She is claiming that not being is greater than being for people with disabilities. After all, you only protect people from something bad, so if you are protecting them by terminating them, their existence must be worse than not existing.
I want to challenge Siddiqui‘s mistaken assumption that termination of disability is greater than existence with disability from a few different angles.
First, every person makes a difference. I realize this sounds very idealistic and almost like something out of John Lennon’s Imagine. However, I mean it in a much more realistic and concrete way. Every person impacts hundreds or thousands of people, even if they are a relative “nobody.” The human race exists on a spectrum of disability and ability. Some people can handle complex mathematics, while others struggle with basic sums. Some people read Tolstoy while others cannot read Dr. Seuss. Most people are somewhere between these poles, but their value as humans is not directly connected to their ability. Even in Siddiqui’s genetically engineered dystopia, there would be a spectrum of ability and disability. There might be some brilliant people, others who are excellent athletes, and some who are gifted public speakers. They are not carbon copies and consequently make different contributions to the well-being of society in their own individual ways. To write off an entire group of people simply because we fail to see how they contribute and make a difference does not deny the fact that no one exists in a vacuum and every person truly does impact the lives of those around them. Even a child who lives five days and tragically dies from some severe genetic disability has impacted the lives of his or her parents and perhaps so many others.
Second, we are not prophets. Perhaps you are still a fan of Siddiqui’s project, and let’s say the science holds up. People are able to absolutely choose children with minimal or no propensities towards various disabilities and conditions. “Perfect” genetics do not guarantee the kind of child that you might want. How many evil people have been geniuses? How many physically gifted people have used their power to harm others? Unless you have perfect knowledge of the future, there is absolutely no way of knowing which child to be born is the best child for you. You might think you know what you want, but you don't, and neither do the genetic engineers. The absence of disability is not the only thing that lends itself to optimization. Emily Perl Kingsley wrote a short piece called “Welcome to Holland,” which I have not been able to get out of my head since I started formulating this response, because I think it illustrates this point powerfully. You might think that you know what you want: a child without a disability. Is it not possible that that child with a disability is actually the best possible child for your family? You could be the perfect fit for your family in ten million different ways, and I don’t think that one mutated gene should stand between that relationship.
Lastly, I would be remiss if I did not mention the slippery slope and societal implications of this technology. You may say that you would never choose to murder an unborn child with a disability, but you don’t want to stand in the way of anyone else who wants to utilize this technology. Live and let live, or, more appropriately, live and don’t worry who else dies. I am confident there will always be people who have children the “natural way.” As these children are born, it is not hard to imagine a caste system. It is not hard to imagine certain professions requiring specific genetics. It is not hard to believe that certain people are categorically disqualified from certain treatments because they are a drain on resources. Siddiqui would not claim to be a eugenicist, but I don’t think it is possible to deny that her technological developments are consistent with typical eugenic thought. We must cleanse the human race of impurities and diminish those who are not our ideal. The early 20th century saw eugenics catch fire around the world, even in my home state of Vermont. Ever since the Garden of Eden and the Tower of Babel, we have wanted to play God. Here we are in the 21st century, and our methods might be different, but the motivation is the same. We want to play God and become the giver of life. Nothing good happens when we do that.
I have tried throughout this essay not to turn this into a personal essay about me. I really cannot stand when authors do that because it simply sounds like emotional argumentation, but I hope you can indulge me a little bit. However, to close on a personal note which is similar to my original reaction that I posted on X, despite never being able to walk or live independently, I hope that I have at least been able to make a little bit of a difference to someone somewhere and disproven her hypothesis that the world would have been a better place if I wasn’t in it.