The truth about Down syndrome
08/30/2014 8:00 PM
08/29/2014 1:52 PM
The biologist Richard Dawkins recently sparked controversy when, in response to a woman’s hypothetical question about whether to carry to term a child with Down syndrome, he wrote on Twitter: “Abort it and try again. It would be immoral to bring it into the world if you have the choice.”
In further statements, Dawkins suggested that his view was rooted in the moral principle of reducing overall suffering whenever possible – in this case, that of individuals born with Down syndrome and their families.
But Dawkins’ argument is flawed. Not because his moral reasoning is wrong, necessarily (that is a question for another day), but because his understanding of the facts is mistaken. Recent research indicates that individuals with Down syndrome can experience more happiness and potential for success than Dawkins seems to appreciate.
There are, of course, many challenges facing families caring for children with Down syndrome, including a high likelihood that their children will face surgery in infancy and Alzheimer’s disease in adulthood. But at the same time, studies have suggested that families of these children show levels of well-being that are often greater than those of families with children with other developmental disabilities, and sometimes equivalent to those of families with nondisabled children. These effects are prevalent enough to have been coined the “Down syndrome advantage.”
In 2010, researchers reported that parents of preschoolers with Down syndrome experienced lower levels of stress than parents of preschoolers with autism. In 2007, researchers found that the divorce rate in families with a child with Down syndrome was lower on average than that in families with a child with other congenital abnormalities and in those with a nondisabled child.
In another study, 88 percent of siblings reported feeling that they themselves were better people for having a younger sibling with Down syndrome; and of 284 respondents to a survey of those with Down syndrome over the age of 12, 99 percent stated they were personally happy with their own lives.
Researchers (including one of us) have found that children and young adults with Down syndrome have significantly higher “adaptive” skills than their low IQ scores might suggest. Adaptive behavior is a measure of how well people are functioning in their environment, such as the quality of their day-to-day living and work skills. A paper published last week in the American Journal on Intellectual and Developmental Disabilities suggests that the Down syndrome advantage may arise from these relatively strong adaptive skills.
Recent work also suggests that the cognitive impairment that is a hallmark of Down syndrome might eventually be managed by medical interventions. In an article published in 2007 in the journal Nature Neuroscience, one of us and a colleague reported a regimen of medication that reversed the learning and memory impairments of a mouse model of Down syndrome. Today that medication and a number of others are undergoing clinical trials.
Medical interventions promise to improve the quality of life of people with Down syndrome in other ways, too. For example, children and adults with Down syndrome suffer from a high rate of obstructive sleep apnea. (Work conducted in one of our laboratories this year found obstructive sleep apnea in 61 percent of a sample of school-age children with Down syndrome.) But this is a manageable medical issue, and proper intervention (like positive airway pressure) has the potential to improve developmental outcomes over the course of an individual’s life span if started early enough.
Another area of research concerns Alzheimer’s-related dementia. Virtually all people with Down syndrome show Alzheimer’s neuropathology by age 40, though not all develop clinical symptoms of the full-blown disease. Studies are underway to examine the neural underpinnings of Alzheimer’s disease at these early ages, in the hope of providing preventive treatments in those with Down syndrome.
The data indicate that people with Down syndrome, and the families who care for them, suffer less than might be supposed. And where Down syndrome does pose undoubted challenges, research into treatment options suggests that there are grounds for cautious optimism. In whatever moral calculation Dawkins and others may wish to make, these facts deserve to be accorded their full weight.
The New York times
Jamie Edgin is an assistant professor of psychology at the University of Arizona. Fabian Fernandez is a research associate at the Johns Hopkins University School of Medicine.