LAST week the biologist Richard Dawkins 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."
http://www.nytimes.com/2014/08/29/opinion/the-truth-about-down-syndrome.html?ref=opinion&gwh=9D356103EA4D082AAD691A3ED25C61E2&gwt=pay&assetType=opinion#
In further statements, Mr. 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 Mr. Dawkins's 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 Mr. 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 I.Q. 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 this 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.
Continue reading the main story Write A Comment 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 Mr. Dawkins and others may wish to make,
these facts deserve to be accorded their full weight.
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.

A version of this op-ed appears in print on August 29, 2014, on page
A23 of the New York edition with the headline: The Truth About Down
Syndrome.


-- 
Avinash Shahi
Doctoral student at Centre for Law and Governance JNU



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