Iceland's Down syndrome dilemma

Iceland's widespread use of genetic testing means people can "pick and choose" which children to bring into the world. These prenatal screenings, which have all but eliminated Down Syndrome, are raising some serious ethical questions. Elaine Quijano takes us through the debate for "CBSN: After the Assignment."

[marina]

it's funny how they say ''we'' during the entire doc.there's no ''we'', there's only the parents who decide, they will be the ones raising the child.If they want the screening who are you to deny them?is this doctor and that lady who's against the screening going to raise the child with a disability?no.

[DeluxxeTrash]

My problem is that they only show the happy DS kids. I feel like a lot of people don't really know what DS could mean. Your child could be really ill and die young. It could need supervision 24/7. These people get Alzheimer kinda early.
I respect the families for beeing strong but I think a lot of people are romanticizing DS without knowing a lot.

[jarronwilliams]

Why are they framing the eradication of a genetic disorder as a bad thing?

[michikoyao]

depending on the economic status of the family, disability can take a whole family out

[muriloninja]

Its nobodies decision but the parents, if you want to raise a kid with downs syndrome, go for it..have fun BUT don't think you have any right to tell anyone else they cannot make the best decisions for themselves.

Having a genetic test like this is amazing IMO!

[cantbeatthebay]

There is nothing wrong with this. There are too many parents in the USA who have handicapped children and will sometimes just neglect the child. Not to mention.. saving the person from a life of agony.

[tiad.]

I've been physically disabled my whole life, and grew up in the hospital. Many of the kids I knew that I was friends with were in foster care because their parents didn't want them, or couldn't handle caring for them and gave them up. My mother was capable of handling it thank goodness, but many of my friends were being raised in the system because their family didn't want them, or were being fostered by the nurses that were also caring for them in the hospital. Children are already such a huge responsibility, most people can't imagine what it takes to raise a disabled child- and it doesn't just stop at 18 either; it's lifelong. Not everyone can handle that responsibility, and if a parent doesn't think they can do it, it's not up for society to guilt them into keeping an unwanted pregnancy.

[Petty_Omen]

There is nothing wrong with being honest to yourself and accepting that you would do a poor job as a pernt to someone with a disability, for whichever reason.

[kishintuchis]

no dilemma here at all. the parents decide to take the genetic test. then they decide what to do when the results come in. no body else should have any say in that decision. period.

[astralclub]

A society where fewer children have to suffer with debilitating conditions. This is a dystopia? Umm...sign me up!

[alexfernandez]

People argue to keep the life but dont want to take care of it.

[Becizzle]

I don't see anything wrong with this. Freedom of choice.

[ahowell]

No one should be FORCED to have an abortion, just as no one should be FORCED to carry a downs baby if they do not want to.  So long as abortion is legal, it can be performed for ANY reason.

[Angie-zkei]

Why is it that in all documentaries I've seen about down syndrome they only show the cute kids that can play and interact with others? Why do they never show the ones who can't talk, or read, or interact, and those who hurt themselves by kicking themselves in the head and so forth? It's very dishonest. People seem to have the idea that all down syndrome kids are going to be easy to treat, but in most cases (and all I've seen in real life), they are absolutely 100% dependent on their parents for everything. People should stop demonizing parents who decide to terminate their pregnancy. If not, they should lead by example and adopt a kid with the syndrome and take care of him themselves. It's easy to just complain and then do nothing.

[nunyabiznez]

My grandparents had their 7th and last child when my grandfather was 49 and my grandmother was 44. my uncle was born with Down's syndrome. my Grandfather became disabled when he was 89 and my grandmother became disabled when she was 86. By then they could no longer care for my uncle. While he was able to take care of certain basic things like dressing, bathing, eating etc he would find things like doing laundry, cooking and shopping challenging. he had absolutely no comprehension of money. he only knew that he would pay for something with paper money and he would get change back which he thought was a pretty good deal because he valued the change more than the paper money, especially the pennies. if he paid for a gallon of milk with a hundred dollar bill and you gave him two rolls of shiny new pennies as his change he would be overjoyed and consider it the best day that month and would thank you vigorously. if he paid for the jug of milk with a five dollar bill and the clerk gave him a stack of hundred dollar bills as his change he would become irate and accuse you of cheating him. The actual math was completely lost on him. Since he thought the entire purpose of doing laundry was to make the clothes smell good he would put anything that smelled good into the washer instead of soup which he considered unpleasant smelling. he once put an entire bottle of his mother's favorite expensive French perfume into the washing machine. on another occasion he dumped an entire jar of grape jelly into the washer so his clothes would smell like grapes jelly. he did not adapt well to change. When my grandparents were put into an assisted living facility he demanded that he be permitted to continue to live in the same house he'd lived in for nearly 45 years. he became violent when they tried to physically move him to a group home. he had never exhibited violent behavior before in four and a half decades. The neighbor's called the police and my uncle was put into handcuffs. he did not take well to that so they pepper sprayed him and beat him with their sticks. he became suicidal in jail and the judge ignored his pleas to be returned to the only home he knew and ordered him into a mental hospital until he was "cured." it took three years for him to transition to a group home. he could not work because he didn't understand instructions well and only his mother or father could ever tell him what to do. he refused instructions from any other source. he did not like being poked and prodded in his mouth so dental care was out of the question. As a result his teeth were all rotten by 40. Since group homes in his state were not free, 100% of my grandparent's savings went to pay for that. The assisted living facility they lived in used up most of their life savings. When they passed away there was only two years worth left for my uncle. After two years they sent him to a state facility which is basically prison for people who are unable to care for themselves. They confiscated all his possessions and auctioned them off. inmates in the state facility are not permitted possessions. he could not even own his own clothes. We could not give him gifts because the facility would take them and sell them at the quarterly auctions as per state law. he was accustomed to a very specific diet and simply would not eat unless served that diet. it was difficult enough at the group home but in the state facility they gave him what everyone else ate and anyone who did not eat would be disciplined and that included illegal corporal punishment. my uncle died in that facility at the age of 58. nobody in the family was permitted to obtain a copy of his death certificate. The reason given was that he was a ward of the state and as such deemed that it would be a violation of his privacy if his medical records were released to hi family which the state considers as having no rights in that regard. They also cremated his body and disposed of it before informing anyone in the family that my uncle died. my uncle had numerous health and behavioral problems throughout his life. i cannot say his life was typical of someone with Down's syndrome. i am not an expert. i can only offer this one example of the life of someone with this condition. i cannot say that it would have been better or worse had my grandparents the option of abortion. i can say that despite all of the above, most of the time he was a happy-go-lucky individual who was always happy to see you, made new friends easily and would hug the entire population of the world if given the chance and i don't think he had a malicious bone in his body.

[Kavasacation]

I really hate this extremist view of abortion. People will vilify and belittle you so it's easy for them to berate you. No one is genuinely happy to have a abortion, no one is evilly laughing "MORE DEAD BABIES, I LOVE IT". it's a personal and extremely difficult choice for parents so their child doesn't have to suffer, regardless of whatever issue it is.
i'm personally against abortion, but it's the couple's choice. Safe and professional procedures should be available for those who choose.

[OodldoodlNoodlesocks]

Is there something wrong with ensuring a person's life will be without ailment before birth?

[jenniferwells]

Genetic testing and making the decision not to go with a "defective" embryo is one of the big things that makes IVF so attractive to perspective parents. I can't blame people for not feeling that they can take on a special needs child, and I say that as a disabled person. Same people who gripe about other people's decision not to proceed with carrying a disabled child are the same ones who will rant later about the taxes it takes to care for that disabled person. I've been through and watched it with others when a parent or parents simply aren't willing to do what needs to be done to really care for someone who is physically (like me) or mentally disabled. It's not pretty

[jackjones]

Sorry, but your attempts to show two sides to this falls flat for several reasons:
- You only show young down's, who's parents love them. That is not so hard, bc the initial development is not so different. The problems arise in puberty mostly and as adults. Where is the love then hmm?
- The defence of the president of the Down society there (and others) comparing it is totally wrong. She is comparing a causal relation, with 100% certainty as for downs, with an uncausal relation, which may never occur. Those are 2 different things. Not comparable.
- Opposition often seeks refuge in unscientific rationales, even religion. You cannot act as if you are propositioning scientific arguments AND have religious beliefs as a basis for these. Belief is not science.
- It is imo not wise and a burden on society (eventually) if you have the knowledge and persue to do this anyway. There is a neat line here as to which life should be preserved and which not. If it wouldnt survive on its own, its probably best to terminate.
But i do grant of course that this will inevitable turn out to be a slippery slope, ethically.

[anonymouse]

"Do we want to eradicate all these illnessess, all these abnormalities?" Yes, we do.