Millat and Irie are a young couple living in East Oxford, in a nice terraced house just off the Cowley Road. After their doctor delivers some happy news — they’re pregnant! — they find themselves inundated with NHS pamphlets and a wealth of passive-aggressive blog pieces about pregnancy. One of the pamphlets is pressed upon them with particular urgency by more than one health care professional. They get the message that it is important to voluntarily decide to get screenings for Down’s, Edward’s, and Patau’s syndromes. Not wanting to be remiss, they do so. The screening for Down’s syndrome returns a verdict of high risk. Millat’s initial reaction is firm: they should terminate the pregnancy. Irie is unsure, however, and further research leaves her in a state of better-educated uncertainty. She shows some of this research to Millat, and he enters a state of deep uncertainty, and deep anxiety as well. There seem to be so many factors to weigh. What is the risk that the child will have a severe intellectual disability? What kinds of potential health problems might be associated with Down’s syndrome? What kind of financial burdens will Millat and Irie face? Are they up to the anticipated emotional burden? Would they develop a creeping resentment at the child or at each other over the decision not to terminate? Would they develop resentment, guilt, or regret over a decision to terminate? What kind of quality of life would the child have? Additional worries are associated with the timing of the screening. By the time the test result comes back, the fetus is eighteen weeks into development. Although UK law allows for late-term abortions if the fetus has Down’s syndrome — this condition falls under ‘Ground E,’ which covers the risk of a child being born handicapped in some way — Irie is adamant that she will under no circumstances terminate the pregnancy if the fetus is older than twenty-four weeks. Although Millat rolls his eyes, Irie insists that beyond this point the fetus might become conscious, and that is the line Irie draws. That gives them precious little time to sort everything out.

As I hope this case illustrates, the decision facing Millat and Irie is extremely difficult and complex. I am focusing on their decision, but we could say the same thing about the policy background and medical practices that foreground their decision. There are a number of factors relevant to questions about how such screenings are presented and offered, about how we think about the decision to terminate a pregnancy, about the law surrounding late-term abortions and about exceptions made for conditions like Down’s syndrome. In Millat and Irie’s case, I have already discussed some of the relevant factors. The fetus’s potential quality of life is but one of these. But it is nonetheless a very important one. It is undoubtedly the case that for some pregnant individuals or couples, the quality of life — and the quality of experiences that are so central to quality of life — functions as a trump card. If they came to believe that the fetus would have a high quality of life, they would bring it into the world. If they came to believe that the fetus would not, they would not. Whether that is an appropriate approach to such a difficult decision, I am not sure. I think there is something to be said for considering the existence of the individual at the very heart of matters.

What, then, should we say about quality of life for those with Down’s syndrome? There is no one answer: the syndrome evinces a high degree of individual variability with respect to level of intellectual disability as well as susceptibility to physical and mental health challenges. In the main, Down’s syndrome is associated with ‘mild to severe’ intellectual disability, as well as developmental delays and increased risk for psychological conditions like depression and Alzheimer’s disease. Consider the association with intellectual disability and developmental delays. The latter represent a challenge, but it is not clear that on their own they represent a threat to quality of life. But one might worry about intellectual disability. In particular, one might think that the risk of even moderate intellectual disability is sufficient to downgrade the quality of life of such (prospective) individuals.

The account of phenomenal value I have offered, however, counsels otherwise. Certainly one’s level of intellectual ability interacts with one’s other abilities, and can contribute to the complexity and evaluative sophistication of one’s experiences. But I have argued that the differences here are minimal when considered from the right altitude. What is far more important are well-functioning evaluative capacities — a robust emotional life, access to sensory pleasures, absence of chronic pain, and enough understanding of the world to develop sophisticated cares. Although cases involving severe intellectual disability are more difficult to adjudicate, and may represent significant detriments in terms of the quality of one’s experiences, it seems to me that those with mild to moderate intellectual disability meet these conditions. In the case of individuals with Down’s syndrome, one might learn this by speaking to one, or by reading or watching the readily available accounts of life with Down’s syndrome. Emerging research further bolsters this judgment.

For example, children with Down’s syndrome are not significantly different from other children at emotion recognition tasks (Pochon and Declercq 2013), and show similar developmental trajectories with respect to the acquisition of emotion knowledge (Channell, Conners, and Barth 2014). And a recent survey of health-related quality of life revealed that although children with Down’s syndrome score lower than other children on measures of motor skill and cognitive development, they score the same on measures of physical complaints and measures of positive and negative emotions, and they score better (at least in this one survey) on a measure of anxiety and depression (van Gameren-Oosterom et al. 2011).

I do not think these kinds of results could or should determine one’s assessment of Down’s syndrome. But insofar as one’s view of the reasons Millat and Irie have to weigh gives a central place to the quality of life of an individual who has Down’s syndrome, I think it crucial to push past negative associations with and stereotypes of intellectual disability, and to consider the total conscious mental life of the individual in more detail. In many cases — those involving mild or moderate intellectual disability and lower risks of extreme health problems — individuals with Down’s syndrome seem to have regular access to experiences that are just as valuable as any within the human range. If societal attitudes were to come to reflect that, and to reflect the idea that this is a more important fact than any fact about raw cognitive ability, the lives of those with Down’s syndrome would likely improve even more.