Interesting piece on Science News

[LARA]

This is an interesting piece on Science News.  It's almost an editorial really and goes very little into the science of what this artist is doing.  I'm not quite sure what it's doing on Science News actually, but it prompts me to read this site more carefully in the future.  It also has an error, which hopefully they will correct.  See if you can spot it.  

There's also a lot of psychology going on in the article that starts to push it into the editorial zone.  I think it's important to be able to spot this stuff, especially when it pops up on Science sites.

http://www.sciencedaily.com/releases/20 ... 073605.htm

At any rate the article is interesting because it brings up questions and sort of makes a few statements that make it more editorializing than just science reporting.  But it's really, really subtle.

Science New's opening statement is what I have a problem with:

"Imagine a world of ‘human perfection’ where disabled people are a distant memory, edited out by medical enhancement and economic cost-benefit analysis: a world where thanks to generic selection and economic crises disabled people find themselves expendable."

After I read the article, I had a few thoughts.  This tagline doesn't match the rest of the article. It's twisting things around trying to get people to associate something positive (healing through science) with something negative (eugenics and mass murder) by using something else positive (diversity and overcoming the real physical obstacles we have to face as humans).

I think it's awesome that people can overcome the obstacles like those described in the article, but does that mean we have to continue to bring children into the world who have severe abnormalities?  Look I am in no way saying that an existing person with a disability should be in any way harmed or degraded or are expendable, but it's kind of sick to keep bringing kids into the world who do have severe impairments if we don't have to.  It's not a bad thing if parents and society bring medicine and science to a point where we can eliminate severe birth defects and be able to make choices and give our children choices.

People aren't art.  Art doesn't have to feel pain or be humiliated for it's differences.  Maybe the creator of the art does if they make something others don't like but there is a line here and that line is human consciousness and choice.

As far as the creativity of motion in gaming goes, we can model physical abnormalities on a computer without them having to be brought into the world so that a human being without a choice has to suffer them and come up with new even more amazing ones to boot.  And nobody has to feel the pain if they don't want to.

Just because some disabled people can have great lives doesn't mean that parents should have to have a kid with a big disability.  Notice I said parents here and not society.

The truth is a lot of disabled people are in real pain and don't really like or want to be used as some creative piece of art for the celebration of diversity.  Creativity is great, but it really needs to be made virtual when it can become something very painful.  Guess what?  Not all of us think our disabilities are awesome.  For those who do fine, but that doesn't mean we shouldn't try to to make kids as healthy and as good as they can be at birth. If you grow up and decide you don't want arms anymore, then fine.  Cut the damn things off.  It's your choice, your body and your arms.  When science gets good enough, maybe you can even grow them back if you change your mind later.

By the way did you catch the error or did they correct it?  It's very small.

[Squid]

I don't think it's Science Daily, here's the problem:

Adapted from materials provided by University of Teesside.

Here's the news release from the University:

http://www.tees.ac.uk/sections/news/pressreleases_story.cfm?story_id=2907&this_issue_title=January%202009&this_issue=188

Here's a link to the contacts for their press office:

http://www.tees.ac.uk/sections/news/mediaservices.cfm

[LARA]

Thanks for the links, Squid.  Apparently when Science Daily adapted the article they pulled the last paragraph that was in error, but missed the same error in a preceding paragraph.  It showed up twice in the Teesside article.  

I think Science Daily needs to stay out of the editorial arena, but if they do they do want to editorialize they need to be careful not to replicate errors from other sources and have a specific editorial section.  The site has links for their articles to be cited, so they seem to be taking themselves pretty seriously as a science source.

[SSY]

such as Mat Fraser, a well-known TV personality, who has thalidomide

Is that the error you are talking about? Owning a tin of thalidomide is a disability now?

While I am not commenting on the boundries science daily have/not crossed, I agree about limiting suffering through not having disabled babies when it is avoidable. The problem is though, people are unable to make logical arguments about their own kids, even if the kids could benefit from it. I am not sure I am comfotable about the government being able to force abortions on people though, incentives on the other hand, I think could work.

[LARA]

such as Mat Fraser, a well-known TV personality, who has thalidomide

Is that the error you are talking about? Owning a tin of thalidomide is a disability now?

Yep.  you got it

I am not sure I am comfotable about the government being able to force abortions on people though, incentives on the other hand, I think could work.

Ummm.  Whoa, stop the ponies here, boss!  Nobody said anything about forced abortions. Why do people automatically assume that kind of thing?  This is exactly the problem.

Here's something I did say:

Just because some disabled people can have great lives doesn't mean that parents should have to have a kid with a big disability. Notice I said parents here and not society.

I am against any kind of coercion to have an abortion or eugenics.  It is a parent's choice.  I'm also against third trimester abortions unless the mom's life is in danger.  Just a little clarification of my position on that one.

But what happens when science gets to the point where a parent with a genetic defect could choose which of their eggs or sperm might be utilized?  Are we going to stop that parent from exercising that choice to not produce a child with a disability?  I think this kind of thing is possible in the near future.

Or if we do want to get into the sticky wicket of abortion, what is wrong with parents being able to choose an embryo that doesn't have a horrible defect?  Or do we have to grant full legal rights to defective blastulas?  How about cancer cells?  They are human, too, despite their genetic abnormalities.  Should they have legal protection under the law, too?

In some cases the choice is more simple, we now know what happens when a pregnant woman takes thalidomide.  We don't allow this drug to be used anymore because of it.  By doing that are we saying that people living with phocomelia right now aren't worthwhile members of society?   Not at all.

This is the problem I had with the article and associating an inflamatory editorial statement with the accomplishments of some people who have disabilities.  In some clear-cut cases it isn't a matter of having an abortion, it's a matter of keeping drugs with teratogenic effects away from pregnant women and encouraging the responsible testing of pharmaceuticals.  There is nothing wrong with this.  It doesn't degrade the kids who suffered the effects of thalidomide to prevent more women from taking this drug.

I mean I really do feel for the guy, and he is a whole person despite not having the full complement of limbs.  And I don't think I would want to wear those uncomfortable plastic prosthetics either.  But accepting a physical disability and saying that you don't want to ever have it fixed are two different things entirely.  I wouldn't force him to have it fixed, it's his choice, but I wouldn't choose to live without arms myself if the problem could be fixed properly.  That's what I'm talking about here.  Giving people reasonable choices if medical science gets to that point.  And the whole thing is, in my way of seeing things, that choice works both ways.  A person doesn't have to have a medical procedure if they don't want one, but they can if they want to.  Autonomy of the individual has to be maintained.

By the way SSY, your choice of using the pic from the predator preacher thread as an avatar is both disturbingly creepy and hilarious at the same time.  I don't know whether to barf or laugh my ass off.

[SSY]

What? My avatar is me actually, have you seen it somewhere else perhaps?

[McQ]

I also noticed that error of the person "having thalidomide". Pretty big mistake. And kudos to LARA for the sharp eye and doing good research on this subject.


But also, to add a point of clarification (not to get too much off the main topic), thalidomide is used in this country and around the world to treat various diseases. It was initially never approved in the U.S. Germany got the first approval to use the drug in 1957, and other countries followed suit. The U.S. began human trials of the drug, but the FDA did not grant approval in the U.S.

However, in 1998, decades after being pulled out of all countries, the FDA granted approval for thalidomide to be used in the U.S. for the treatment of ENL, or Erythema Nodosum Laprosum, which occurs in 60% of leprosy patients. They are the iconic large, weeping boils, that cause intractable pain for victims of leprosy.

Since then, thalidomide has been used for at least nine different types of cancer or cancer-related diseases, but has approval in the U.S. for the treatment of ENL and Multiple Myeloma. So it's still around but is available through an extremely strict distribution program that literally monitors every capsule of the drug.

But that's getting off topic, and just some interesting FYI stuff.

[Kyuuketsuki]

After I read the article, I had a few thoughts.  This tagline doesn't match the rest of the article. It's twisting things around trying to get people to associate something positive (healing through science) with something negative (eugenics and mass murder) by using something else positive (diversity and overcoming the real physical obstacles we have to face as humans).

Um ... whilst I agree it implicitly concerns eugenics I see nowhere that it mentions mass murder. Personally I'm not convinced that eugenics is a bad thing if it can be done in a way doesn't stop people's basic rights (I guess I'm referring to genetic manipulation here) ... I'm prepared to admit I'm wrong (certainly I haven't read around the subject much) but it seems to me it has become "bad" more by association with Nazi fascism than anything else.

Kyu

[LARA]

Kyu, from the article  "a world where thanks to generic selection and economic crises disabled people find themselves expendable."

I guess I was deriving the mass murder part from this section of the tagline.  So I might have extrapolated that too far, but people finding themselves expendable sounds pretty ominous to me.  However you want to view it, though, feel free.

McQ, Actually, I think the info on thalidomide is far more interesting than the discussion I started, so thanks for going off topic.

[McQ]

McQ, Actually, I think the info on thalidomide is far more interesting than the discussion I started, so thanks for going off topic.

Glad I could help derail it, then!  

Anything you ever want to know about thalidomide, just ask.

[Kyuuketsuki]

Kyu, from the article  "a world where thanks to generic selection and economic crises disabled people find themselves expendable."

I guess I was deriving the mass murder part from this section of the tagline.  So I might have extrapolated that too far, but people finding themselves expendable sounds pretty ominous to me.  However you want to view it, though, feel free..

Well we'll have to agree to disagree then because I don't think that phrase equates to mass murder.

Broadly speaking I think we, the human race, should someday start to truly manipulate our own genes.

The way I see it is that terraforming is unlikely to ever be a realistic concept (too big, too much energy and effort involved) so rather than adapt a planet to us we could consider adapting ourselves to a planet ... that way I figure we would have to broaden what a human is (the definition of) and could move out into the galaxy with relative ease.

But back to the subject, assuming we develop the technology I almost think it would be immoral not to get rid of genes that are bad but let's make it clear I am talking by genetic manipulation not by mass-murder or birth control and not aiming to create a "superior race" in the conventional sense, I'm talking about genetically tailoring humans to fit given environments. There probably isn't a god but we could almost become ones and I think that's an intriguing prospect ... in fact I think I'm going to have to adapt that into my story universe.

Kyu