Trisomy 21 : how about extended free testing?

[krazyKemist]

Our health minister (in Québec - that's up here in Canada) has decided to make the prenatal test for trisomy 21 (amniocentesis) free for all pregnant women.

linky

It already was available for free for women considered at risk - pregnancy over 35 yo. If you were not, according to this criteria, in an at risk group, you could pay to have it done at a private clinic.

Organisms who protect and help trisomic people do not agree with that decision : they think it constitutes a discrimination against people with trisomy since free testing will, they think, promote a higher level of pregnancy termination of trisomic foetuses.

I do not think it will have such a fearsome impact : the risks associated with amniocentesis (miscarriage, premature labor) already deter many women for whom the testing is more warranted - and already free. Women who would insist on having the test done despite low risk should be a rare occurence.

But let's say we forget that detail, that the test is 100% safe for mother and embryo. Would you consider the wide availability free of cost of such a test as an attempt at eugenics from the state ?

 

[casebro]

Hmmm, what are the chances of even the highest risk group?

And, in younger women, doesn't the trisomy happen as often, but the fetus is spontaneously aborted? So offering older women -or those who are trisomy positive- abortions is only making up for their lack of natural miscarriage?

And just how bad are the risks of amniocentesis?

Off hand, I would guess there's no conflict here. Except for the phony indignation of the anti-eugenics crowd.

 

[TragicMonkey]

Would you consider the wide availability free of cost of such a test as an attempt at eugenics from the state ?

I've never understood how people can interpret being given a free choice in their own important matters to be "state interference". Surely it's exactly the opposite!

 

[Gord_in_Toronto]

I don't think that this is an actual done deal as yet. It is still just a recommendation:

A public health commission in Quebec is recommending all women have access to free prenatal Down syndrome testing.

I also note from the url provided that no one seems to be against the totality of the commission's proposals and that these include a number of other recommendations in addition to the testing.

To suggest this is state support of eugenics is a bit of a stretch.

IMHO, of course.

 

[articulett]

I think it's smart and cost effective. Trisomy 21 children often need special care and they often come to rely on siblings as their parents age. If you are going to give birth to such a child, it helps to know in advance, and many want the option to terminate such a pregnancy--often times because of the burden it might place on other children in the family.

As long as they are informed of the risk involved with the procedure, I think it's a very good idea. Having karyotyping of fetuses done can detect other abnormalities too as well as the sex of the fetus if the parents are interested. And most often, it's very reassuring. It gives scientists a good database of how common various anomalies are. I wonder how many women paid for this test themselves in Quebec?

Although an older mother has a higher risk of having a Down Syndrome child with each pregnancy due to "older" eggs-- most Down Syndrome children are actually born to younger mothers-- because those are the people having the most children. Many of them don't survive to be born and many that are born have some fairly severe heart defects and medical issues in addition to mental retardation. Often they are sterile, and this affects people who want to "spread their genes into the future". Prenatal conditions that affect fertility (such as Turner Syndrome or Klinefelter Syndrome) are more likely to be terminated than those that don't. In any case, it's a good idea for all parents to want the children they have, and if advanced knowledge helps that process, then, I'm all for it.

I wonder if Sarah Palin knew in advance that her son would have Down Syndrome?

On the other hand, I was a genetic counselor for a couple that had sickle cell trait-- their fetus had a 1 in 4 chance of having sickle cell anemia... the mother wanted the test (she had relatives who had suffered with the disease, but the father felt like it was a eugenics plot, and refused to let her have an amnio.) My patient advocacy hadn't prepared me for that situation. He refused to drive her home if she got the amnio, and I wondered if he'd be sticking around caring for the baby if it had sickle cell anemia. They were fighting in the parking lot when I left... I never knew what happened, but I figure the odds were in their favor that the baby would be okay... and even if it was affected, many cases of sickle cell anemia are not really horrible... it's treatable. But I am pro choice for the woman in every case so long as there is no coercion involved.

 

[krazyKemist]

I don't think that this is an actual done deal as yet. It is still just a recommendation:



I also note from the url provided that no one seems to be against the totality of the commission's proposals and that these include a number of other recommendations in addition to the testing.

To suggest this is state support of eugenics is a bit of a stretch.

IMHO, of course.

It's not in the english link. The protest was an item in the "health section" news yesterday (those are in french only), and was by a defense group for people living with trisomy 21.

As I said, I don't think what they fear is such an issue, given the known risks of amniocentesis. (I will have to look on the risks associated with amniocentesis; my only take on it is that I personally know someone whose wife went into labor prematurely because of this - the baby was born in its late 20-something weeks). I mean, who will test if they're not particularly at risk.

RE: the risk for trisomy 21

At maternal age 20 to 24, the probability is one in 1562; at age 35 to 39 the probability is one in 214, and above age 45 the probability is one in 19.

There is also another aspect to this. I'm remembered, seeing this protest, of the defense groups for deaf people and and for autistic people, who seem to make their defense an issue of, for lack of a better word, culture.

The most hard core among the deaf defense groups (which are themselves deaf) are opposed, for example, to their deaf children getting cochlear implants, or learning an oral language. They state that they have a culture, the deaf culture, with its language, and have the right to raise their children inside that culture, to the exclusion of hearing-able culture.

A similar phenomenon can be seen in some autistic people, who frankly don't want a "cure" for what they see as their authentic personality, "normality" be damned.

At the head of the extended testing protest was this young trisomic woman who stated that she was afraid that this would promote the disappearance of "her people", who basically felt this as a rejection, as a judgement on her life as worthless.

There was also the basic slippery slope argument ("where are we going to stop") and a vague reference to Nazis ("they wanted only blue-eyed people once"), stated not by this woman, but by a "normal" spokesperson (who was probably supposed to help her; she should have let her talk, she was expressing herself fine, without any Hitler at all ) which made me think that this person, at least, saw this as eugenics.

I don't think it's eugenics as such, but it can be seen as a judgement on the worth of mentally handicapped people's life.

Personaly I don't know what I would do if faced with the decision to abort a trisomic foetus. You have to consider, for one, that not every trisomic is equally affected. Some have only a slight mental retardation and can live a normal life by themselves as adults. Another thing to take into account is that not only mental faculties get affected, but there can also be other severe malformations, especially of the heart, which can make their lives short and full of suffering.