Behind a Lens: Iceland’s Down syndrome dilemma

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It’s 10:00 p.m. in downtown Reykjavik, and a object is usually starting to set. The light grey paint that has hammered a sky all day now has soothing streaks of orange. The summer solstice in Iceland is in full swing. An 18-hour day recedes, and in reduction than 6 hours a object will start to arise again. we am walking behind to my hotel. we zip my fleece, things my hands into my pockets and my chin into my chest. we theory one would design a republic named Iceland to still be cold in May. we step out of a travel as a singular automobile crawls past. The sidewalk, like a street, is pristine. Clean, well-paved. It mirrors some of a best attributes of a country: orderly, fit and equal

This landmass, straddling a continental plates of both Europe and North America, is interesting. Only somewhat incomparable than a state of Maine, it has a mostly homogenous population. Just 6 percent of Icelanders are foreign-born and it’s reported that some-more than 90 percent can snippet their ancestors behind to a strange Viking settlers. More than half of of a country’s race lives in a capital, Reykjavik. Our interviewees giggle during a everybody-knows-everybody believe that my organisation and we confront regularly. And it feels true: Reykjavik, a collateral city homogeneous to a tiny town. It creates me consternation if these minor, governmental anecdotes somehow minister to a purpose of a journey: bargain since scarcely all profound women in Iceland whose fetuses have been diagnosed with Down syndrome are finale their pregnancies.


Iceland is a volcanic island full of glaciers and waterfalls, including Seljalandsfoss, seen here, a two-hour tour from a collateral city of Reykjavik. The whole republic has a race of about 330,000 people — a tiny some-more than Pittsburgh.

It is a installed query, identical to a doubt of since any chairman embarks on a preference to finish a pregnancy, sundry and unbecoming for any particular lady and man, regardless of nationality. However, Iceland does mount apart. In Denmark, stop rates for fetuses with Down syndrome mount during 98 percent; a figure in France is 77 percent; and in a U.S., studies advise about 67 percent. Iceland is a usually republic to have reached a consensus: from 2007 to 2015 each singular profound lady in Iceland consummated a fetus with Down syndrome following a certain diagnosis. That series could be lopsided by a tiny race — a whole republic is home to fewer residents than midtown Manhattan. Even so, while internal adults know a statistic, they find it comparatively shocking. Should that come as a surprise? Prenatal screenings can now some-more simply and accurately exam a risk of carrying a child with Down syndrome. Additionally, a supervision of Iceland mandates that each trusting mom here be sensitive about a choice of removing a screening test. It goes like this: a midwife asks a profound Icelander during a country’s categorical hospital, Lanspitali, “Would we like to have information on screening for Down syndrome?” The infancy — a whopping 90 percent — will answer “Yes.”


This laboratory during Landspitali University Hospital, a country’s categorical medical center, is where a infancy of Icelandic women’s prenatal blood tests are processed.

Therein lies a sleazy slope, according to Thordis Ingadottir, a mom of a 7-year-old lady with Down syndrome and a boss of a Icelandic Downs Association. That doubt alone, according to Ingadottir, pushes women to perspective Down syndrome negatively, as something to be screened out. She says it influences a lady who formerly competence not have been deliberation Down syndrome as a probability for their unborn child and creates a crossroads. Has a lady in doubt deliberate what she would do if she tests ‘high risk’? What form of mental aria does this inflict? 

However, is a choice not to know?

This is a new quandary in complicated society, one that women and their partners in a past never faced, since a record simply did not exist. Now, in Iceland’s socialized health caring system, it is information that contingency be presented. When we pronounce to staff members during Landspitali Hospital who perform a prenatal screenings and yield conversing for women if a formula prove Down syndrome in a fetus, their design seems unified: to educate, share information and offer a lady a choice, but bias. 


Agusta, age 7, is one of dual children with Down syndrome during her propagandize in Iceland. In this behind-the-scenes shot, Agusta shows her oddity with a worker while filming during a Bruarfoss Waterfall.

It is a formidable discussion, one that stretches over a pro-choice and pro-life debates in Washington. In Iceland, there is no allied stop debate. It is legal, set to stay and widely accepted. Icelanders are honestly usurpation of advancing technology, accept estimable health caring support and mostly welcome women’s rights. Yet, a stop of a Down syndrome fetus provokes an perplexing ethical, systematic and governmental web of issues — even more, a age-old strife of inlet contra science. Is some-more believe some-more power? And if so, is that a good thing? Down syndrome is not a usually commotion that can be screened for, it is usually a primary one being finished right now. What will be next? Where do we pull a line — or do we? While Iceland is face to face with these dilemmas, a questions sputter opposite other grown nations as well. 

As we nearby my hotel, we uncover my hands from my coupler slot and untuck my chin from my chest. we grasp a frail atmosphere in my palms and we demeanour up. Night has finally arrived on this volcanic rock in a icy North Atlantic. All seems relaxed in this safe, still and removed land. The destiny medical and reliable implications that distortion forward feel so human, in this ancient place filled with showy waterfalls and huge glaciers. we open a doorway to my hotel and breathe a final smell of a moonlight. Wherever this discuss leads us, it is ever some-more expected that we’ll shortly reason larger power over destiny generations of humanity, and a diseases and disorders they might — or might not — face.

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Posted by on Aug 12 2017. Filed under Health & Medicine. You can follow any responses to this entry through the RSS 2.0. You can leave a response or trackback to this entry

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