There are no more children with Down Syndrome in Iceland. At least, almost none.
Depending on where you are in the world, and when in time, a certain explanation might come to mind.
Were this the mid-20th century, or in several authoritarian regimes around the world, we might expect that this result was achieved through some version of eugenics: state programs based around the forceful elimination of the “weak” from society. While most associated with the horrors of the Nazi regime, eugenics as a practice was adopted in the U.S. as well — in fact, some eugenics laws adopted in the early Third Reich were modeled on U.S. policy.
The real answer is something different. Iceland instead adopted advanced prenatal screening technology that is able to detect Down Syndrome before birth. In the early 2000s, among mothers who used the technology, nearly 100% chose to abort the child. As such, there are no more children with Down Syndrome.
This example, while historic, is an important one. The 21st century has seen the development of novel genetic engineering technologies, notably Crispr which was designed in part by UC Berkeley’s own Jennifer Doudna, who was awarded the Nobel Prize in Chemistry for her work. These technologies, while still in their infancy, have the potential to allow for direct human control over our own genetic development. Most commenters on Crispr and similar technologies seem to focus on the more “science fiction” aspects, projecting hundreds of years into the future and discussing the ramifications of a world in which it is possible to design “superhumans”. A range of movies (most notably Gattaca) have explored the dynamics of such technologies with wealth and social class. However, like most emerging technologies, the reality might not perfectly sync with expectations.
The real potential of Crispr, one that will be realized in the next few years not centuries, is in genetic medicine. The Iceland example, of detecting and removing genetic traits (albeit through modification and not termination), will soon become the norm for most parents. However, we need to fully understand the legacy of eugenics in medicine, and what precisely the evil we are trying to avoid is, when we shape the regulatory environment that determines how this technology is used. Namely, is this different enough? Or is it just eugenics by another name?
The two major questions that must be answered first within U.S. law is how the technology will be distributed, and once available whether genetic medical treatment should be made a mandatory aspect of child care.
Distribution and Equity
Will genetic medicine be monopolized by the elite, or will it be broadly available? More importantly, should regulation resolve the question in favor of broad distribution?
If we view the technology as something that is inherently positive (something that is very much up to debate, as we will soon see), then we need to ensure that incentives are aligned to promote its continued development. If we leave it solely to market forces, the technology will likely be rapidly developed but its cost will be exorbitantly high — an attempt to cover the billions of dollars invested in development. If price-controlled to be accessible to all, development will drop to a standstill — why invest billions of dollars for years with no profit, only to have to sell at a price below what is feasible for any ounce of recovery?
The proper policy response is probably subsidization. Research costs could be subsidized while allowing for market prices, thus allowing for a smaller market price. However a high market price will still likely be required in the early days, if only to cover the cost of the technology’s use itself. As such, even if our goal is wide distribution, we are limited in how we can act.
A great example in this case is the Covid-19 vaccines. Private companies were subsidized billions of dollars to develop vaccines as soon as possible, with those subsidies allowing for the vaccines to be delivered free or at low cost to much of the United States. If the development was solely private, the vaccine would likely have been very expensive to cover the huge investment and risk involved in development, which would have hampered the public health response. Conversely, if the state simply mandated a low price, without the subsidiaries, less companies would invest the development and production money in the first place.
Yet this is not merely a question of logistics. There are deeper issues at play when we ask how this technology will be distributed across class and other social lines. The worry is that the technology will be monopolized by the wealthy, by the erection of cost barriers that discriminate on economic lines. This is worrying not only because such a barrier limits the potential utilitarian benefits to a small population, but also because it can amplify social division and discrimination. Dramatically improved health for the very wealthy, with no distribution down the chain, further expands the wealth gap. The wealthy would live comparatively much longer and healthier lives, allowing wealth advantages to compound even further. Their better health may be a positive thing, but the result might be an even greater gap between the rich and the poor as the rich are less burdened and able to remain productive longer.
These second-order effects may be hard to predict, but the necessary policy result might be greater intervention to ensure equitable distribution — even if that places a higher burden on the taxpayers. The net benefits of wide distribution down the line will hopefully justify it.
But even if the technology can be widely distributed — should it be?
The Liberal Eugenics Movement
Let’s return to the Iceland example.
The effective elimination of Down Syndrome was achieved through the free choices of thousands of individuals. In a similar manner to the systematic abortion of people assigned female at birth in mid-century China, it was not a mandate. The state did not require abortion. Rather, individual parents decided that the social reality around them, and concern over the life the child would have, indicated that termination of the pregnancy was the preferable option. It is important to understand this case when shaping legislation, as with the increase of genetic medicine this exact issue will return. The problem modern critics of the Iceland result (one commenter even referred to it as a “genocide”) have is that it achieved the same result that eugenics was aiming for — the removal of disabled individuals from society. It simply did so without state-mandated sterilization.
So what is the evil of eugenics? Reducing eugenics simply to the lack of free will forced by the state seems to make it no different than any other restrictions on fundamental rights. Was it not the methods alone, but the goal of a world without disabled people that was wrong?
Proponents of little limitations on the usage of such technologies in America argue that the element of choice is what matters. The “liberal eugenics” movement argues that the goal of eugenics was basically right — that certain conditions are objectively bad and should be removed as an option from society. Their critique of state eugenics is the usage of state force for the sterilization and murder of the disabled. Instead, liberal eugenics argues that we need to expand the choice of parents to remove such traits through medicine, with the understanding that enough people making those choices will lead to the “proper” result, but with no violence or force necessary.
Some go further, and argue that parents shouldn’t be able to deny such treatments — it is still “liberal” eugenics because existing, free-willed people aren’t being mistreated or acted upon, only future ones. That logic shows that the spectre of historic eugenics isn’t gone, though it raises a difficult question for policymakers. The state, on occasion, has declared that parents are obligated to provide certain medical treatments to their children. Denial of necessary medical treatment is criminal child abuse. So, with these new treatments that will soon be available, should such legislation be expanded? Under what circumstances, if any, should legislation allow for parents to refuse to use such technologies on their children, and is the refusal to treat a condition before birth morally equivalent to forcing them to have that condition? Certainly we might not believe that all conditions deserve mandates, but how will Congress draw the line? Should it have the power to draw that line at all? Here we must again keep in mind the historical spectre of eugenics, and consider the relationship between the past and present.
These questions matter, because not all disabilities are equal or should be treated the same. It seems likely that with time genetic engineering will be considered a standard element of care, removal of which is akin to child abuse and results in legal penalties (like most refusals of care today). The application of legal penalties may be a positive result in some cases of genetic diseases that dramatically reduce life expectancy and quality, especially given that unlike with abortion Crispr therapies do not affect the viability of the pregnancy, but we need to understand the limitations we want to place on this technology before we decide that it is always the best solution.
The problem with historic eugenics was not merely its methods or its goals, but also its understanding of disability. It assumed that the “disability” of certain conditions arises solely from its biological nature, rather than the lack of social structures to provide meaningful accommodations. Even if we accept the existence of a problem, we still have to decide the proper remedy, and eugenics targeted the individual and not the society that made the disability matter.
What does disability mean in the context of Crispr? If the dreams of techno-optimists ever come true, then the average human could be much more “able” than the most able-bodied person today. Our understanding of what counts as a limitation or “disability”, as opposed to a facet of life that can be solved by a mix of technical solutions and policy, is arbitrary, depending on a skewed understanding of what is “average” or “natural”. It is the deviance from “normal”, and that alone, that is typically used to justify different treatments for a range of human conditions. For everyone else, human limitations (as arbitrary as the line is) are just another facet of life that are accommodated for by default through social and technological structures that assume those limits.
The liberal eugenics movement argues that there are biological limitations, notably the inability to see, hear, or move, which lower the standard of living and where a biological “cure” would be apt. In contrast, disability advocates argue vigorously against the notion that they have “conditions” that need to be “cured”. At minimum, the policy debate will need to consider various ways to resolve the problem before we move the state into the realm of proscribing medical treatment. The point here is that we need to determine whether a disability results from nature, or rather from the social structures around us, before we decide that it can be state-mandated and not merely a choice (accepting that the state has some interest in promoting the technology’s use, such as to reduce the future burden on the healthcare and social services system, to reduce the need for expensive accommodations, or to protect children from parents that fail to provide certain “standard” elements of care).
To take the example of China, being born female is not a biological disability. In this case, it is clear that the moral action is to fix the social structures that put costs on biological traits, not the underlying traits. In other words, the proper response in the China case was to fix the patriarchal system that made parents believe that aborting female children was the rational option. If you can achieve the same result through social policy change, not biological intervention, is that the right policy approach to take? That seems obvious from the outside, but it may be harder to notice equivalents in our own society. And more importantly, proscribing medical care is the much easier approach for a government to take. Challenging its own biases and structural limitations is much harder work for a political system.
Some disabilities do pose tougher questions than others, and the curse of genetic engineering is that its application must be done before the child is old enough to decide for themselves what medical approach, if any at all, is best for them. Once time has passed that action or non-action cannot be undone. A major policy debate will be over what treatments parents must provide their children. How do we determine between the cases where we need to mandate the application of Crispr versus fix the relevant social structures (such as by providing accommodations for the disability)? More importantly, how would legislation encode the distinction, if there should be one at all?
Another important issue is the impact on existing disabled individuals. What will happen to those children whose parents do not make a choice to use genetic engineering? This may additionally rope in religious considerations: groups that refuse Crispr therapies may also be religious or cultural minorities. If part of the functional “disability” comes from their status as a social minority, what happens when the condition becomes rarer and less accommodated for? Like with the distribution question, we cannot consider merely the first-order utilitarian effects of debilitating diseases being treated. We have to also consider the second-order impacts that will necessarily exist in a world with cultural, religious, and wealth diversity — and consider how legislation should adapt to a world where physical disabilities are much less common.
Additionally, disabled groups have distinct cultures that have value unto themselves, and their loss from world culture would matter. For example, deaf communities have formed complex and long-lasting cultures based around unique experiences and forms of communication. Here, it is important to bring in the voices of the disabled community in order to determine who truly has the right to make these decisions.
This technology thus poses more questions than can be explored here, given its earth shattering potential ramifications. We do not fully understand the actual limits of the technology. Idea of techno-optimism and dystopia have accompanied the conceptual development of Crispr in lockstep, but we need to be cognizant of our inability to discern the myth from the matter. What technology is capable of doing seems to routinely surprise even its greatest proponents, and as such a pure focus on medical applications might be a disservice to predictive ethics. The horizon of possibility is expanding outward at a rate that outpaces our ability to track it.
This case may be completely different from cases in the past, and incredible amounts of human suffering will be alleviated. This may be one of the greatest advancements of human well-being in history. However, knowing the history of eugenics means that we need a presumption of caution when it comes to the use of medical technology to rid society of “disabilities”.
Featured Image Source: Scientific American.