The Last Children of Down Syndrome • Hacker News Board

Re: The Last Children of Down Syndrome

#81

Post by gibspaulding » Wed, Nov 18, 2020, 6:26 PM UTC

chmod775 wrote: post #8

Prenatal testing is one of the few solutions to this "post-darwinian" world (not in the usual sense of the word) with its modern medicine that will result in mankind accumulating more and more genetic defects. Though slightly more ethical from my point of view would be gene-editing to remove those defects, instead of just terminating the fetus. Edit: Also I'm not talking about down syndrome specifically. There's a lo…

I'm surprised to see how controversial this comment has been.

It's seems intuitive to me that as we are able to solve genetic defects with modern medicine, we'd begin seeing more and more of them. I imagine even bad teeth, or poor eyesight would have greatly reduced one's likelihood of surviving and reproducing in our not so distant evolutionary past, let alone something like Type 1 Diabetes, or a chronic heart condition.

That of course is just speculation though. Does anyone know of any studies indicating one way or the other? My quick search wasn't able to turn anything up.

Re: The Last Children of Down Syndrome

#82

Post by GordonS » Wed, Nov 18, 2020, 6:34 PM UTC

bennettfeely wrote: post #64

They mention it in the article but we should really be calling this what it really is, 21st century eugenics. It's not "changing who gets born and who doesn’t", it's killing the weak, the unwanted, the vulnerable. It's saying that our lives have meaning and worth and dignity only so long as we are wanted and not a burden to others. Few minds and opinions change on HN but I encourage anyone viewing this as a positive…

> I encourage anyone viewing this as a positive development of society to meet someone in person with down syndrome in person and ask themselves if that person would be better off killed.

I have a daughter with Down's (I've posted a couple times in this thread already), but I still view this as a positive development.

I love my daughter dearly, and would die for her if need be - and I don't see any contradiction with this; I don't want my daughter to have Down's and the additional possibility of health issues that goes with it, or of course the inevitable societal issues. Her life is going to be a lot harder than that of a typical person, and of course it has been and will continue to be tough on her parents.

But this isn't about parents killing their existing children, it's about allowing future parents to make a choice whether to bring someone with possibly very severe disabilities into the world.

Re: The Last Children of Down Syndrome

#83

Post by Damorian » Wed, Nov 18, 2020, 6:39 PM UTC

chub500 wrote: post #78

My parents were manipulated into having prenatal disability tests because of my mom's low amniotic fluid during my sister's pregnancy. Tests came back positive and the doctors recommended abortion. My parents were horrified, being pro-life. They endured a traumatic next few months and a premature delivery. That was 1989. My sister was fine but it left my parents with enduring resentment of doctors to this day. My abo…

This is what frustrates me as well. I know two people who were told that their children will have down syndrome with almost complete certainty, and their kids ended up completely fine, at least in this regard. We're on our third child and the screening and push to make a decision is at every appointment. On our first pregnancy, after the first ultrasound the doctor told us there was a "roughly 10%" chance she had down syndrome and asked us what we wanted to do. As if I'm going to kill my kid over a slim chance at disability determined by a grainy picture from a 10+ year old ultrasound machine operated by someone just trying to make it to their lunch break. I can't help but wonder how many parents terminate perfectly healthy children.

Re: The Last Children of Down Syndrome

#84

Post by tosseuthansia » Wed, Nov 18, 2020, 6:43 PM UTC

I find it fascinating how many comments argue that these lives aren't worth living in a forum that just a few days ago had a (albeit unscientific) poll that said that most of you are currently depressed. 55-45 when I checked it. I was surprised it wasn't higher.

This despite being a population that largely skews young, educated, healthy, high earning, highly sought after. We hold the power to insist that ours are the "Good Values". We are the beautiful people Marlyn Manson sung about.

And yet, a set of people who are largely unappreciative of the value of their own lives, are passing judgement the lives of the disabled.

Why do you think their lives aren't worth living?

Re: The Last Children of Down Syndrome

#85

Post by GordonS » Wed, Nov 18, 2020, 6:44 PM UTC

sgt101 wrote: post #47

renewiltord wrote: post #6

Hmm, so the testing isn't high sensitivity? It appears that the initial couple had the foetus tested and then did not abort but found that they had a child with Down Syndrome in the end. Interesting.

I think that there are two tests. First there is a non invasive test that can be done to evaluate if the foetus is "at risk" of Downs. Then there is a sampling one that is very specific. Basically counting the chromosomes. But the catch is that the specific test carries a risk to the pregnancy - so it's not applied without cause. As well as the sensitivity issue in the article there is also a specificity issue. My da…

There is a newer type of test, only very briefly mentioned in the article, and strangely not even by name: NIPT (Non-Invasive Prenatal Testing).

It works by testing tiny amounts of the baby's DNA that can be found in the mother's blood. It is close to 100% effective for detecting Down's Syndrome.

It needs only a blood sample, so carries no meaningful risk for mother or fetus, but it's more expensive than the older amnio or sampling methods, so is usually only available privately (at least in the UK).

Re: The Last Children of Down Syndrome

#86

Post by LatteLazy » Wed, Nov 18, 2020, 6:46 PM UTC

gowld wrote: post #19

tristor wrote: post #14

> Yet a gulf seems to separate the publicly expressed attitudes and private decisions. I would be more surprised if this were not true. It's not very PC to say, but quite simply being different is not inherently a moral good. Downs Syndrome in particular is more controversial, because people who have this disorder typically are happy in their lives. I've spent a not insignificant part of my life working with teenager…

> meaningful quality of life factors. What are these?

That's the million dollar question here: is the Downs person's life worth more than the person (or people) they replace?

Re: The Last Children of Down Syndrome

#87

Post by Damorian » Wed, Nov 18, 2020, 6:47 PM UTC

Fumtumi wrote: post #79

bennettfeely wrote: post #64

They mention it in the article but we should really be calling this what it really is, 21st century eugenics. It's not "changing who gets born and who doesn’t", it's killing the weak, the unwanted, the vulnerable. It's saying that our lives have meaning and worth and dignity only so long as we are wanted and not a burden to others. Few minds and opinions change on HN but I encourage anyone viewing this as a positive…

'killed'. Abortion is not killing. Our society defines it as okay. You apparently don't agree with this but you are not the majority here. No human aborts a fetus for fun. My wife and i lost our 'fetus' on the 3 month mark. There have been a lot of thoughts about this experience and lots of emotions. And i would probably abort a fetus with Down Syndrom. No one is doing an abortion easy. It is never easy for whatever…

Posts like this confuse me. It is absolutely killing a human. This is a scientific fact. The moral question is whether or not they are a person, or otherwise, whether or not they deserve rights, at various points of development, and apparently, any medical conditions they have or may have in the future, based on probabilities from current medical research.

Re: The Last Children of Down Syndrome

#88

Post by Fumtumi » Wed, Nov 18, 2020, 6:55 PM UTC

Damorian wrote: post #87

Fumtumi wrote: post #79

Earlier quoted context omitted.

'killed'. Abortion is not killing. Our society defines it as okay. You apparently don't agree with this but you are not the majority here. No human aborts a fetus for fun. My wife and i lost our 'fetus' on the 3 month mark. There have been a lot of thoughts about this experience and lots of emotions. And i would probably abort a fetus with Down Syndrom. No one is doing an abortion easy. It is never easy for whatever…

Posts like this confuse me. It is absolutely killing a human. This is a scientific fact. The moral question is whether or not they are a person, or otherwise, whether or not they deserve rights, at various points of development, and apparently, any medical conditions they have or may have in the future, based on probabilities from current medical research.

its not. You can think you define it like this, but our society is not killing humans when we abort.

https://en.wikipedia.org/wiki/Homicide https://en.wikipedia.org/wiki/Fetus

" The other question related to the beginning of human life is even more difficult to answer. It is the fertilization of the egg cells; but a conglomeration of cells in the early phase of pregnancy can hardly be characterized as a human person. The human identity, personality, and worth is associated with the functioning of the brain, so only when the brain is fully developed can there be any talk about an unborn human being." https://pubmed.ncbi.nlm.nih.gov/7476658/

Just because you say 'It is absolutly killing a human' your statement is wrong.

Re: The Last Children of Down Syndrome

#89

Post by matchbok » Wed, Nov 18, 2020, 6:56 PM UTC

tosseuthansia wrote: post #84

I find it fascinating how many comments argue that these lives aren't worth living in a forum that just a few days ago had a (albeit unscientific) poll that said that most of you are currently depressed. 55-45 when I checked it. I was surprised it wasn't higher. This despite being a population that largely skews young, educated, healthy, high earning, highly sought after. We hold the power to insist that ours are the…

That’s not what anybody is saying. Are you offering to pay for the extra millions in lifetime care and need for those children?

Re: The Last Children of Down Syndrome

#90

Post by dogma1138 » Wed, Nov 18, 2020, 6:57 PM UTC

xupybd wrote: post #43

tristor wrote: post #14

> Yet a gulf seems to separate the publicly expressed attitudes and private decisions. I would be more surprised if this were not true. It's not very PC to say, but quite simply being different is not inherently a moral good. Downs Syndrome in particular is more controversial, because people who have this disorder typically are happy in their lives. I've spent a not insignificant part of my life working with teenager…

The difficulty I have with this is we are now actively choosing who gets to live and who doesn't. Yes it's at a very early stage of pregnancy but it may have a profound impact on the future of all human societies. The morality of such actions should be examined thoroughly. This is far from a cure to genetic diseases it is removal of diseased individuals from the population. Any selective removal can be dangerous. If…

This isn’t new, either nature took care of things in the past or people did...

We’ve essentially only had a few decades when it was not possible to identify these conditions in the womb and society was able and willing to support these individuals and allow them to live on.

Realistically in the past these children would’ve been killed by their parents either directly or through abandonment and those who weren’t often didn’t survive through adulthood especially once their parents have passed.