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Post by Jodi on Jan 30, 2006 16:43:36 GMT -5
If you cut and paste the link, it should work. The stuff in this article has been on my mind a lot lately (those of you who know me know what I'm talking about). Anyway, just thought I'd pass it along. Oh, by the way - we have a new baby girl in our family - a 10 week old golden retriever!!! I'll try to get some pics up. She's adorable and the kids love her (so do the parents  ) www.whittierdailynews.com/ent/health/ci_3451336 Hey - just tried the link and it works! |
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Post by CC on Jan 30, 2006 22:35:08 GMT -5
JODI, THANKS for sharing that article, had not seen it till now. My thoughts are no matter what tests are out there, people will do what they will do, KWIM. Many hear right at UNO have said they had the Amino, not because they would abort BUT that they wanted to be prepared if necessary, so if that really is the case then having a test like this seems to me would be a good thing. CONGRATULATIONS girl on your new addition to your family ;D We here LOVE Golden Retrievers ours is 12 years old aka "Goldie" and just the Best dog ever ;D I want to see, hope you can get a photo up CC ~ |
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Post by Deannalee on Jan 30, 2006 23:27:00 GMT -5
Tom Tomlinson, professor and director of the Center for Ethics and Humanities in the Life Sciences at Michigan State University, said the goal of screening is to reduce the incidence of disabilities in the general population.
'But what does that say about the status of people who already have disabilities?' he asked. 'Our concern is that the focus has been questioning the value of the contribution of people with Down syndrome.'
What I pulled from the article above is the kind of thing that turns my stomach. I don't mind people being informed during their pregnancy to prepare for challenges in their children. What I do care about is that people still carry the attitude that people with special needs can't contribute to our society and they need to be eliminated. I look at my little boy today and see a wonderful toddler....not a blemish on society.
Deanna
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Post by Debbie on Jan 31, 2006 1:51:02 GMT -5
Wow, I don't think I want to read that.  For me, this is too personal. |
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Post by ethansmammy on Jan 31, 2006 12:20:29 GMT -5
It's all very well doing testing - I for one wanted to know if Isabel had any problems so I could mentally prepare, I was keeping the baby anyway, I don't believe in abortion.(Just my opinion - don't want to start a debate ). What upsets me though is that doctors are still saying (for example in my case) "I'm really sorry you don't deserve this" and in the delivery room "don't worry next time we can do testing" and the genetics counselor that I saw a week before Ethan was born painted a very grim picture  . I knew nothing about DS, I was 30 years old and thought my life was over - how ridiculous! Professionals need to be more positive and better informed, especially if they have anything to do with testing and decisions about the life of a child. Not that I need to tell you guys this - just venting really. |
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Post by Jodi on Jan 31, 2006 12:42:43 GMT -5
I'm sorry but I hafta ask... who holds the golden book of knowledge that spells-out the definitions of the minimum requirement to contribute to society? Do drug dealers contribute to society? Do terrorists? Hmmmmmmm... Do either of them place a "burden" on society? "Society Standards" SUCK! But thats JMHO!!! LOL!!!! Jodi |
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Post by wrblack on Jan 31, 2006 14:40:24 GMT -5
Still working on this, huh, Jodi? I thought we had hashed this all out over on the Down-syn list back in November, when articles in the NY Times and Washington Post all came out about the study of earlier scans reported in the New England Journal of Medicine. Guess news is getting to the west coast late these days, maybe the Pony Express broke down again. Nuchal translucency screen is not new. Study results are new. There are newer, even earlier tests on some people's drawing boards (e.g. see www.geneticsmedia.org/Pap_smears.htm ). Maybe soon have closer to diagnostic test as early as 5 weeks conception. And then, on quite different research fronts, there is more news, and somewhat newer news. Researchers at Johns Hopkins may have found a promising path to develop some real treatment of some of the less desirable effects of having an extra 21st chromosome ( see www.hopkinsmedicine.org/Press_releases/2006/01_24_06.html ). So, Jodi, maybe something more for you to think about. Would even earlier and more reliable prenatal testing be a good thing if the purpose of the test was to identify cases for prenatal treatment, treatment that would cut down on heart defects, digestive tract malformations, and cognitive impairments, so often found in our kids? Just casting about the other day, stumbled across what is probably best known quote from Jerome Lejeune, one of the first researchers to identify chromosome 21 as the explanation of Down syndrome. Pardon the outdated terms, but he said, in French I would think, "I look forward to the day when a mongolian idiot, treated biochemically, becomes a successful geneticist." M., professor, doctor Lejeune died in 1994, I think. And I think one of his chief regrets was that he had not discovered a cure for Down syndrome, one of the genetic conditions for which he had discovered the cause. But maybe we're a little closer to that day he was looking forward to. -- Cheers, Bob |
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For me, this is too personal.
. I knew nothing about DS, I was 30 years old and thought my life was over - how ridiculous! Professionals need to be more positive and better informed, especially if they have anything to do with testing and decisions about the life of a child.