Is Screening The Solution To A Down Syndrome Problem?

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NHS to offer safer Down syndrome test

October is Down Syndrome Awareness Month. For weeks the web was flooded with beautiful photos and inspirational stories of men and women who became pre-school teachers, Zumba teachers, athletes, models, DJs, artists, etc. There has never been a better time to live with Down syndrome, or has there? As we near November, and the days get shorter and darker, it seems so are the times to live with Down syndrome: Today’s Guardian reports: “NHS to offer safer Down’s syndrome test to pregnant women.”

The non-invasive procedure will be launched in 2018, to women at “higher risk” of a Down baby to avoid amniocentesis, which carries a small risk of miscarriage. This strategy with NIPT (Non-Invasive Prenatal Testing) as second screening test can significantly reduce the number of invasive procedures. All good news, many argue, but the key question remains unanswered: Why is Down syndrome singled out as the main target of a “neutral” test for the purpose of enabling selection?

Many individual decisions add up to the elimination of Down syndrome on a massive scale

The justification that government and health insurers use is that many pregnant women and couples feel it is important to be given the choice to prevent a life of suffering for their child and their family. And exactly here it is that states hide behind “individual choice.” Because what the government says is: we feel that systematic eradication of this group is justified, and therefore we promote and finance the procedure under health care even though it does not bring any health benefit. That is a very negative judgement. In fact, there is no amount of positive awareness that will weigh up to this message. And that describes the role of government in many individual decisions adding up to elimination of Down syndrome on a massive scale. Unesco argues: “The adding up of a lot of individual choices to the ‘acceptability’ of aborting certain kinds of foetuses brings forward a societal phenomenon, which resembles a kind of eugenics in the search for a ‘perfect child.’”

Down syndrome has been presented as a “risk” or a “problem” for decades: women are identified to be “at high risk” for carrying a baby with Down syndrome while the percentage for having a boy or a girl is presented as a “chance.” While Down syndrome may have presented serious challenges back in the seventies ― that some justified as a ground for screening ― the truth is that a baby born with Down syndrome today can look forward to a long, healthy and busy social life filled with lots of opportunities and ample room to follow their dreams.

Yes, there are women who perceive having a child with Down syndrome as suffering. There are also people who associate having a female child as suffering, or a child with a genetic variation such as albinism, or a child with a different sexual preference. The point is that the “suffering” that is associated with Down syndrome is a subjective perception; it is not based on objective, scientific definitions.

Because Down syndrome is presented as a “problem,” screening is offered as the “solution”

While the variability of Down syndrome can lead to ambiguous views, conventional medical definitions do not describe the average symptoms of Down syndrome as “serious” ― think of IQ, life-expectancy or other possible life-limiting factors. Furthermore, research among a large population shows that persons with Down syndrome and their families rate life better than the population without Down syndrome. This is not dependent on individual functioning. Drawing on these facts “Downscreening” must not be considered a health-program but a human rights issue.

Like other groups, people with Down syndrome must be considered a universal human variation. Unlike other groups Down syndrome is the main target of a National screening program. In comparison, people who have albinism, another genetic variation, are rightfully protected by several international texts asking States to prevent discrimination and eradication on the basis of strong prejudices.

Rather than presenting mass “reproductive choice” as the “solution” for a group of people that is unjustly portrayed as a “problem,” the government should make the morally superior choice and invest in inclusion, equality and fighting prejudice. This will benefit the whole society and will decrease the demand for screening.

What happens to people with Down syndrome, happens to humanity

This was my rational pitch to the news that the UK will join the ranks of countries that has chosen to treat Down syndrome as a problem to eliminate, now my emotional one: My daughters were born with Down syndrome, my son was not. If you were able to ask my daughters what life is like (with Down syndrome), they would probably give you their undivided attention for a few moments. Hazel would likely start telling you about her friends in school, her best friend in the world and little brother Olav. The story might get increasingly hard to follow but will surely end in laughter and a high five. April will gaze at you solemnly from behind her glasses. Searching her brain for the proper words to express her feelings, she will be pensive for a while as in meditation. Just as you will start to notice her delicate features and the freckles on her cheeks and tiny button nose, she will wrap her small arms around your shoulders and a smile will radiate like a ray of sunshine.

Our lives are not defined by the presence of an extra chromosome. While the road to fluent speech, flawless writing, and coordinated bicycling is often filled with obstacles that seems as large as Mount Everest, planting our flag on top makes it all the more worthwhile. Of course, like any kid, they can drive a mom insane at times. Hazel can be stubborn as a mule and April can take an hour to get dressed. Above all, they have the ability to simply accept their flaws and those of others without judgment and still fully enjoy life. In my opinion, that makes my children perfect.

I do not blame individuals for making different choices than I did. Women are under enormous pressure to bear a “perfect” child and sadly, the month of October must be especially hard on them. I feel the government and medical professionals are failing people with Down syndrome. And what happens to one group of humans, happens to all humanity.

Renate Lindeman is the spokesperson for Downpride and representative of Saving Down syndrome. These are International social justice groups that, together with UK’s Don’t Screen Us Out campaign, promote awareness and equality for people with Down syndrome.

Downpride and Lejeune Foundation have jointly submitted a statement to the UN to ask member states to review the Dutch prenatal screening policy, to respect the equal human rights of people with disabilities and to abandon the use of prenatal genetic screening for the purpose of prenatal exclusion and selection.

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