Fragile X gene screening urged in Australia

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ASPartOfMe
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31 Jul 2017, 12:39 am

Doctors push for all women to test for intellectual disability gene

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A new study is backing the push to have women screened for common single gene disorder, Fragile X Syndrome, which is linked to a number of intellectual disabilities including autism.

Women who are pregnant or planning to have children could be offered screenings from their doctor for as little as $100.

Currently, Australian guidelines only recommend that women be checked for FXS when there is a family history or if the patient requests it.

A Murdoch Children’s Research Institute study found women did not suffer “psychological harm” when they were offered the test coupled with counselling, and is therefore leading the push to revamp current guidelines.

As part of the study more than 1100 women were surveyed. It found 71 percent of non-pregnant women and 59 percent of pregnant women chose to be screened for FXS if offered.

Eugenics is alive and well.

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Kiprobalhato
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31 Jul 2017, 1:04 am

can i ask how you got "eugenics" from this?

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ASPartOfMe
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31 Jul 2017, 1:38 am

Kiprobalhato wrote:

can i ask how you got "eugenics" from this?

Parent finds out there fetus has the fragile x gene. Fetus is aborted. The 'inferior" people never get born. If this happens often enough supposidly the human race improves.

With Down's Syndrome this exact thing is occurring

A world without Down's syndrome?

Quote:

Ninety per cent of people in the UK who know their child will be born with Down's syndrome have an abortion - so there are concerns a new, highly accurate test to identify babies with the condition, will lead to even more terminations.

William Reville: Eugenics is wrong about Down syndrome

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Eugenics as practised in the first half of the 20th century earned a very bad name. However, eugenics is now reasserting itself in a new form, sometimes called new eugenics. Proponents of new eugenics claim that, unlike the old eugenics, new eugenics is voluntary, ethical, respectful of human rights and based on correct science. Nevertheless there are reasons to fear that new eugenics is not as different from the old eugenics as supporters claim.

A prominent promoter of new eugenics, Julian Savulescu, a professor of practical ethics at the University of Oxford, says we have a moral obligation as a species to enhance ourselves. New eugenics aims to produce the highest-quality babies by using modern genetic and reproductive technologies and by widespread screening of foetuses for defects.

At the moment there is little or no capacity to repair foetal genetic defects, although repair technologies are under rapid development, and most women abort foetuses diagnosed with a problem by prenatal screening in countries where abortion is readily available.

cyberdad
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01 Aug 2017, 2:31 am

A quick google search will reveal that fragile X is comorbid with ASD and is not always causal, although there is some association/overlap with fragile X and ASD

BettaPonic
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02 Aug 2017, 7:21 pm

I don't see any problem, this has happened with Down syndrome for a while. If they do keep the fetus that have the opportunity to prepare. If they don't, they probably could not handle a special needs kid.

ASPartOfMe
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03 Aug 2017, 1:32 am

BettaPonic wrote:

Unlike the future downies and probably autistics we got to be born before these "new eugenics" technologies came into bieng so we can be blase about it.

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03 Aug 2017, 6:46 am

ASPartOfMe wrote:

BettaPonic wrote:

Unlike the future downies and probably autistics we got to be born before these "new eugenics" technologies came into bieng so we can be blase about it.

There will always exist Down syndrome and autism as long as there are people. What's do bad about parents willingly aborting some? As long as it's there designing what's the harm?

ASPartOfMe
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03 Aug 2017, 8:39 am

BettaPonic wrote:

ASPartOfMe wrote:

BettaPonic wrote:

Unlike the future downies and probably autistics we got to be born before these "new eugenics" technologies came into bieng so we can be blase about it.

There will always exist Down syndrome and autism as long as there are people. What's do bad about parents willingly aborting some? As long as it's there designing what's the harm?

With downies the rate is supposedly 90 percent. If it happens with autistic genes it will probably be even more. But the "new eugenics" involves more the than abortion, it is going to about gene editing which will happen often after a person is born. There might be downies and autistics left but there are going to be less, a lot less then now and those that are left will even be more stigmatized than we are now because they will be viewed as a result of the stupidity of their parents who chose to have a "diseased" child. The stigma against parents who choose to have a "diseased" child will be such it will encourage some to abort or edit who might have wanted us. No supports or benefits will be given to those who will be viewed as have made a morally unconscionable decision to have a "diseased" child.

BettaPonic
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03 Aug 2017, 9:22 am

ASPartOfMe wrote:

BettaPonic wrote:

ASPartOfMe wrote:

BettaPonic wrote:

Unlike the future downies and probably autistics we got to be born before these "new eugenics" technologies came into bieng so we can be blase about it.

There will always exist Down syndrome and autism as long as there are people. What's do bad about parents willingly aborting some? As long as it's there designing what's the harm?

I still don't see why it's bad for a woman to willingly decide giving birth to the kid is bad? This technology would probably take a while to get widely used. Your speculation seems slightly over exaggerated. Down syndrome fetus are more aborted now and they don't suffer that. The goal isn't to make autism less common. It seems to be to give people a choice.

ASPartOfMe
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03 Aug 2017, 10:52 am

Do Downies really suffer, has anybody polled them? We just assume they suffer because it looks bad to us. If they do suffer in large numbers as assumed is it because of the Down's or the stigma of being disabled?

Choices can have grave consequences.

Life at the present time is pretty rough for transgender and other non binary people, high suicide rate, transgender bashing, people doubting the realness of transgender etc. I do not see any great calls for genetic research with the eventual calls for gene screening or editing for gender dysphoria (listed as a mental illness in the DSM) or calls for people to have a choice to abort blacks because they too can expect a life of significant disadvantages. But for the intellectual, developmental and physical disabilities, this is kind of acceptable and among autistics, people are enthusiastic about it.

If genetic screening becomes available for autism it will be used. This will mean we will be even more of a minority. The smaller a minority you are are part of the more of a disadvantage you are at. I might be and hope I am being overly pessimistic as to what those disadvantages will be but the basic idea of further disadvantage seems hard to dispute.

BettaPonic
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03 Aug 2017, 12:48 pm

ASPartOfMe wrote:

The parents really suffer. They watch there child live about 40 years with by numerous conditions linked to it. I disagree that by becoming a smaller group means automatic problem.

ASPartOfMe
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03 Aug 2017, 3:36 pm

We are a smaller minority than most other groups. I think that is part of the reason we have not gotten as far as other groups, nobody knew we existed until the 1940's, and nobody knew a good percentage of us existed until the last 10 or 20 years.

There are other factors besides size and there are always exceptions such as the Jews in America. But historically the Jews have been persecuted wherever they go and have quite notably had eugenics ideas used against them. The Nazi's used the physical and mentally disabled as a trial run before going after their main targets.

Again the idea the parents (and the downie/autistic) are automatically going to suffer is an assumption. If they are never born or have their Down's Syndrome/Autism gene edited out of them we never get to find out.

cyberdad
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03 Aug 2017, 5:18 pm

ASPartOfMe wrote:

Again the idea the parents (and the downie/autistic) are automatically going to suffer is an assumption. If they are never born or have their Down's Syndrome/Autism gene edited out of them we never get to find out.

The reality of what parents think of the prospect of Downs or autism is not pleasant
http://www.bbc.com/news/magazine-37500189

cyberdad
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03 Aug 2017, 5:22 pm

ASPartOfMe wrote:

The stigma against parents who choose to have a "diseased" child will be such it will encourage some to abort or edit who might have wanted us. No supports or benefits will be given to those who will be viewed as have made a morally unconscionable decision to have a "diseased" child.

There has been threads that have debated (among other things) whether a person with Aspergers could donate sperm or eggs to a fertility clinic

Whatever advocacy or affirmative action has achieved it will not change what nuerotypicals fear about having to have a child with disability

ASPartOfMe
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03 Aug 2017, 6:14 pm

cyberdad wrote:

ASPartOfMe wrote:

The reality of what parents think of the prospect of Downs or autism is not pleasant
http://www.bbc.com/news/magazine-37500189

The experiences related in the article were mixed.

cyberdad wrote:

Whatever advocacy or affirmative action has achieved it will not change what nuerotypicals fear about having to have a child with disability

.

I was discussing parents in a hypothetical future where you can tell is a child is going to be born autistic or whose autism can be gene edited who will abort/edit their child who would not have in today's world.

Personally, I find it hard to believes that the abortion/edit rate would not be much higher with 1967 attitudes towards LBGTQ then today's attitudes towered that group should knowledge that the child was not straight ahead of time. I find it hard to believe that when this technology is available attitudes towards autism would not make a major difference in the abortion/edit rate. There is a difference of fear level in believing bringing up future child will be full of more and unique difficulties as well as some joys than believing the child will be a 24/7 nightmare.

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03 Aug 2017, 7:02 pm

ASPartOfMe wrote:

The experiences related in the article were mixed.

.
There is no confusion over the numbers. 90% of British parents abort. As tests actually get more accurate then this will actually increase. Nothing mixed or ambiguous about what parents think

ASPartOfMe wrote:

Personally, I find it hard to believes that the abortion/edit rate would not be much higher with 1967 attitudes towards LBGTQ then today's attitudes towered that group should knowledge that the child was not straight ahead of time. I find it hard to believe that when this technology is available attitudes towards autism would not make a major difference in the abortion/edit rate. There is a difference of fear level in believing bringing up future child will be full of more and unique difficulties as well as some joys than believing the child will be a 24/7 nightmare.

You are rationalising this issue from a perspective of somebody with Aspergers. Nuerotypicals fear the social stigma of intellectual disability because most carry stigma themselves. I've watched a number of testimonials of mothers who ended up with an intellectually handicapped child who all seemed to be worried about whether their child would ever be accepted, could live on their own and if they could ever communicate with their child. I'l be honest that these thoughts also went through my mind.

Basically people are neither mentally prepared nor want to risk losing their social status or social life or be no longer considered part of the "normal crowd". If the option is provided we already know what the parent will choose to do. Projecting rational consideration of the issue doesn't apply to an emotionally charged young mother facing the prospect of a life of looking after a disabled child

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