Guest post: Who gets to live in techno-utopia? Disability rights, eugenics, and effective altruism

This is a guest post by Victor Zhenyi Wang. Victor worked as a data scientist in global health and development at IDinsight India. He is currently a Masters student at the Blum Center for Developing Economies at UC Berkeley. He is interested in technology policy, participatory approaches to AI, and digital public infrastructure. He studied mathematics at the Australian National University where he developed a passion for long distance running. Victor also writes a blog about technology, ethics, and disabilities.

In September, I attended Manifest, a forecasting and prediction markets conference. This conference attracted a unique combination of speakers: Nate Silver, Robin Hanson, Destiny, Aella, to name a few. Other prominent guests included Richard Hanania, author of the recent “The Origins of Woke” and Jonathan Anomaly, an academic who writes on the ethics of eugenics, among other things. This conference, in Berkeley, also attracted a typically rationalist and effective altruism crowd.

Before the conference, there was a fair bit of contention around Richard Hanania’s attendance. A HuffPost article had just come out which revealed that under a different name, he wrote a number of hateful diatribes on race, gender, among other things. Since this is a prediction markets conference, a market was formed around whether he deserves to attend as a speaker. Austin Chen, the founder of Manifold (the forecasting app behind the conference), published a statement on his views on why he chose to invite Hanania; Hanania’s talk was withdrawn although he did attend the conference to promote his new book. A related post is on how many people protested by not coming.

Meanwhile, another speaker, the philosopher Jonathan Anomaly, spoke on “liberal eugenics”. “Liberal” eugenics concerns genetic enhancement at the group level through manipulation via technology. This is “liberal” in that no existing people are harmed and there is no obvious coercion. Instead, voluntary genetic selection and enhancement¹ is mediated via technological advancements. This is analogous to existing practices in genetic screenings of embryos. For instance, parents today have the choice to abort a fetus if certain genetic conditions such as Down syndrome are detected. This is legal in some countries, such as Australia.

If we believe that this is permissible, then why not allow parents to do this for other traits? As genome sequencing and predictive medicine evolve, we will likely have the technology to predict traits of embryos in vitro. It may even be possible for us to estimate probabilities for various genetic illnesses, mental illnesses or even addiction. One trait Anomaly stressed at the conference was intelligence and more broadly, whether society at large should select for children that are more intelligent or otherwise gifted.

At the end of his talk, the audience did not challenge his premises or core arguments. A common idea for why you invite or even platform someone with different, sometimes radical, opinions to your own is so you can challenge them publicly. If so, then does this mean everyone at the talk agreed with the speaker?

Walking out of the talk, I overheard a young attendee casually mention “wow I had no idea technology was so advanced now”. As someone who lives with a disability (and likely candidate for embryonic annihilation), it is a surreal experience to be in a room full of people who believe that they would like to do good in the world and at the same time be a person who they would prefer not to exist at all. I wish I had the capacity in that moment to have said something — anything — but I didn’t. I only hoped that others in the audience felt the discomfort that I did and that they did not de facto agree with the speaker.

But I think that if you find utilitarianism somewhat plausible, it is actually consistent to believe that the world in which liberal eugenics is widespread and permissible results in better outcomes for its denizens. Since, after all, if we focus on the elimination of disabilities, people with disabilities live “worse off” lives than those without, all else being equal, so surely this would be a much better world? If we focus on maximizing propensities for beneficial traits in future persons, surely they would all live better lives?

In this short essay, I want to challenge the idea that disabilities result in lives which are worse and discuss why cost benefit analysis (and therefore cost-effectiveness) is not a reasonable framework for thinking about disabilities.

I think what many utilitarians get wrong about disabilities is that most disabled people actually do believe that our lives are worth living but also valuable and ought to be valued. In fact, it is challenged whether disabled lives are “worse”. There is a New York Times magazine article from 2003 by Harriet McBride Johnson, a prominent disability rights activist, detailing her meeting with Peter Singer.

“Are we ‘’worse off’’? I don’t think so. Not in any meaningful sense. There are too many variables. For those of us with congenital conditions, disability shapes all we are. Those disabled later in life adapt. We take constraints that no one would choose and build rich and satisfying lives within them. We enjoy pleasures other people enjoy, and pleasures peculiarly our own. We have something the world needs.”

We fall in love. Our capabilities are different but not necessarily diminished. Advocacy by those much braver and much more determined than myself have changed history so that today, we are able to attain the capabilities that we wish to.

Obviously, people living with disabilities face a range of challenges in accessibility. Yet these challenges are not inherent to disabilities. For example, shortsightedness in the neolithic period would result in serious difficulties yet in today’s society, with both technology (glasses) and changes in the structure of society, in the configuration of people’s lives, shortsightedness does not really represent a diminishment in someone’s capabilities. What Johnson is claiming is that it is really a property of society that disabilities constrains the ability for one to attain the capabilities they wish for.

This becomes a problem in making policy decisions. Common metrics of wellbeing like Quality Adjusted Life Year (QALY) or its equivalent Disability Adjusted Life Year (DALY) may feel neutral and objective but are based on surveys that rely on subjective accounts of participants’ (who are typically without disabilities) ratings of quality of life with and without counterfactual disabilities or illnesses. So this metric is going to inherit all the biases society already has against disabled people.

If you imagine a utopia with this kind of metric at its core, what kind of society would this create? Since people with disabilities are a minority and we typically have both lower baseline utility and less utility to gain, this is a group that should be de-prioritized in order to maximize the total amount of good we can do since resources are limited and need rationing. As Nick Beckstead and Toby Ord have previously written, if we try to avoid disability discrimination in healthcare rationing, other worse outcomes might arise. In trying to smooth some air bubbles under wallpaper, we might create other ones. Better then, to not have to make this decision altogether, and eliminate the possibility that such individuals might exist at all. Liberal eugenics fits in perfectly with this idea.

This is however, not a new idea. In fact, historically, cost effectiveness analysis or cost benefit analysis have always been used to deny accommodations and basic dignities for disabled people. For example, in 1981 President Reagan signed an executive order which put Section 504 of the Rehabilitation Act of 1973 at risk. In this executive order, he mandated that regulation should “maximize the net-benefits to society” as well as choosing between alternative approaches that incur the “least net cost to society”. In other words, disability accommodations only help the disabled, do not benefit most of society, and tend to be terribly expensive (adding in elevators to a subway system tend to be much more expensive than just designing the subway with elevators in mind) — these concerns should be weighed against the interests of broader society. Accessibility and equity needs to be squared against cost justifications.

Since then, the language of cost benefit analysis has become an ubiquitous excuse to deny all sorts of basic rights in American politics. But this is really quite absurd. In 2012, the Department of Justice conducted a cost benefit analysis on whether prisons should prevent rape.

In the words of the disability rights activist Judith Heumann, that this is even being discussed “is so intolerable, I can’t quite put it into words.” The history of disability rights in this country was fought with disabled bodies thrown against callous institutions. This reveals the true nature of the threat -that it is tempting and beyond that terribly easy to use the language of cost effectiveness as an instrument of dispossession.

Techno-optimists will tell us that technology, through liberal eugenics, will create a world in which everyone is better off by design. But there will always be people with disabilities even if we were selecting ‘optimal’ embryos with predictive genetic selection. In that world, which seems not so far off, we will be marked as lesser, our dignities and rights denied to us. It would be a return to a world in which the expendable members of society are systematically institutionalized and recast as abject figures, confined. The air bubbles under the wallpaper vanished at last.

Footnotes

1. Some draw a distinction between enhancement and treatment. I lean towards the side that this line is likely blurry and also I do not consider this to be an interesting question in this context