| ▲ | fabbbbb 3 hours ago |
| It reads like a specific genome would lead to deterministic outcomes. It does not. Life is messy. Most Down Syndrome people have happy lives, some can even live alone and have an independent daily live. Life expectancy is up to 60 years. Yet in Iceland „Democratization“ of genetic diagnosis lead to basically 0% Down Syndrome kids (births). Where does this stop? What with someone of a genetic indication of aggressive cancer- life expectancy 55? Abort? The same (detectable) genetic mutation leads to vastly different lives. This is correlation. Nobody sees the many undiagnosed broken genomes with no visible symptoms that would be aborted with more such businesses like this. |
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| ▲ | nkrisc 2 hours ago | parent | next [-] |
| People born with Down syndrome deserve all the respect and dignity any other person does. I have two kids. If I could have chosen whether or not they would be born with Down syndrome I would choose would “without” every single time. If either of them were born with it I would love them the same but I would never choose it, if I had the choice to make. |
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| ▲ | arjie 2 hours ago | parent | prev | next [-] |
| With pre-implantation genetic testing, a sufficiently large number of embryos, and a sufficiently small number of children desired, it's just a ranking question. A pair of parents with 6 embryos, and 2-3 children desired will likely just try their most viable embryos first. One can argue that they should try the embryos that carry known conditions before they try the ones that don't, but I can't imagine under what ethical structure that is desirable. As for trisomy-21, if we wish to increase the rates in the future we can stop performing pre-implantation testing and the MSAFP and nuchal translucency and so on. After all, even if we abort all embryos that carry the markers today, new such embryos will be formed in the future since it comes from non-disjunction so selection pressure once removed will allow it to return. |
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| ▲ | XorNot an hour ago | parent | prev | next [-] |
| I would not bring a child into this world knowing they would die an early, painful death, at best leaving behind a family and children of their own without a parent themselves. Potential people aren't actual people though either. |
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| ▲ | inglor_cz 2 hours ago | parent | prev | next [-] |
| Most cannot live alone and their parents have to take care about a huge, powerful 100 kg baby that needs constant attention until its death. My friend from elementary school has had a Down kid at 19. She takes it well, but managing a grown-up man five times as strong as her (she is petite) when he decides to do something like "take his bicycle and ride on a busy highway" is exhausting. This is why most people abort Down fetuses. |
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| ▲ | teruakohatu an hour ago | parent | next [-] | | In my country people with Down syndrome often live in housing together in suburban areas, with a social worker keeping an eye on things (independent living) or a carer available 24/7. They do sports, catch the bus, go to neighbourhood bbqs etc. Your depiction of a person with downs is not representative of the majority. | | |
| ▲ | dana-s an hour ago | parent | next [-] | | > In my country
> Your depiction of a person with downs is not representative of the majority. It may be for a different country, both experiences are valid to hear. In my country as far as I know it doesn't happen like yours. | |
| ▲ | Forgeties79 43 minutes ago | parent | prev | next [-] | | I’m fairly certain your depiction is not representative of the majority experience throughout the world. I can’t say for 100% certain but I struggle to believe what you’re describing is more common than not. That strikes me as a level of support provided by the state that most people with ds - and their family - do not enjoy throughout the world. | | |
| ▲ | teruakohatu 21 minutes ago | parent [-] | | > I can’t say for 100% certain but I struggle to believe what you’re describing is more common than not. This is absolutely common in New Zealand. I think treating people with dignity, respect and part of the community is as important as state financial support. Our government will also subsidise wages in certain industries for people with certain disabilities. So it’s common for people with intellectual disabilities to be working at supermarkets. | | |
| ▲ | Forgeties79 17 minutes ago | parent [-] | | Never questioned if it was common in New Zealand. I’m sure some countries have great support, and others do not. But in the aggregate, most people in the world simply do not have that level of support. So the conversation needs to be calibrated with that in mind. Remember the original context here: someone talked about what they experienced and then you came in questioning it saying how wonderful the support you see is, then said what they experienced is not the majority experience, when the reality is quite the opposite actually. The support you are seeing is what is actually uncommon worldwide. New Zealand is exceptional here. |
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| ▲ | inglor_cz an hour ago | parent | prev [-] | | I am not an expert on Downs kids to know how majority looks like (are you?) Here in CZ, I knew of one preCovid cafe that employed adult Downs as waiters, and they absolutely needed supervision most of the time - cannot take the complicated Prague public transport alone. Maybe it is different in rural settings where there is just one bus line that never changes its course. That said, prospective parents usually don't make their decisions to abort or not to abort on an expected median outcome, but some of the more pessimistic-but-realistic scenarios. |
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| ▲ | fabbbbb 2 hours ago | parent | prev [-] | | Does this make sense to you and her? Does she wish the kid would not have been born? | | |
| ▲ | akie 2 hours ago | parent | next [-] | | Such an inconsiderate and loaded question. Screening an embryo that could not survive outside the womb and deciding to stop the pregnancy based on the results is not the same as "wishing the kid wasn't born". | | | |
| ▲ | inglor_cz an hour ago | parent | prev | next [-] | | She is the sort of very optimistic and energetic person that she does not mind most of the time. But she is a bit sad about her decision not to have any other children - her first kid was just too much to handle, and she wouldn't be able to take care of another one, even if healthy. This is also a hidden cost of having a Down's baby - given how exhausting the care is, other kids either get less attention, or don't get born at all. Also, the father skedaddled. Allegedly this happens quite often with unhealthy kids... | |
| ▲ | StefanBatory an hour ago | parent | prev [-] | | I knew people who had to take care of their children for their entire life, since they never grew up mentally above 6-years old kid. Answer I heard is hushed "Yes". |
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| ▲ | NotGMan 34 minutes ago | parent | prev [-] |
| The toll it takes on parents and siblings, based on stories one reads, must be horrible. You destroy the life of the family and greatly make the lives of healthy children harder. Why would you sacrifice your healthy children for one who has no real future? Complete inversion of common sense. |
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| ▲ | arcticfox 13 minutes ago | parent [-] | | "has no real future"? I.e. not a net-productive member of society? Fun fact, machines are taking everything over, so you and any "healthy children" may be in that same camp very soon. IMO, anyone capable of living happily while being outcompeted by machines is well-adapted for the future. I'm not; average Down's Syndrome folks seem to be. |
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