Talk:Down syndrome/Archive 10

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Karen Gaffney

Surely we should list Karen Gaffney, but for her world-class swimming, her academic achievement, and her public speaking and advocacy, but probably not for an honorary degree that doesn't really mean anything except for the fact she was recognized for her achievements. Anybody have any other opinion on this, or have an idea of how to phrase her entry? Centerone (talk) 04:47, 11 May . (UTC)

I added more specifics today. I wasn't planning to add anything to this article last night. It happened when I discovered that the Karen Gaffney article was sporting an orphan tag because no other Wikipedia articles linked to it. That really surprised me. I found this very informative article with a great section on notable individuals, and managed to both add her here and fix the orphan tag in the Gaffney article before I ran out of evening. I spent more time last night working on the links than on the text. Since this news is not even a week old, I am having trouble, for now, finding a citation from the mainstream press. I am sure that will change and I'll be able to do a mainstream citation before long.

I was surprised by your opinion that these types of degrees don't mean anything to you. Fair enough, but I hope you can be open to the idea that they might mean something to some people. I just wiki-linked to Doctor of Humane Letters here, but was disappointed to find that article sporting a lack-of-citation tag. I was hoping it would state that these degrees are usually conferred for demonstrated, life-long, consistent, outstanding humanitarian efforts (such as advocacy, but not limited to advocacy) that have added up to make a meaningful difference in people's lives, even if the person's body of work was non-academic in nature. If I can find a citation related to the worthiness and significance of these types of humanitarian degrees, and why universities confer them, I will add it to Doctor of Humane Letters article.

All opinions about merits of humanitarian degrees aside, I felt that the event was of notable historical significance, since she was the very first living person with DS to ever receive one, and I felt it was also of notable significance as the most recent development in the long-standing advocacy story that she continues to build. Positive recognition from communities such as universities greatly expands the recognition she has already gained from within the Down syndrome community and from within the sports community. Wide-spread recognition can be an important tool in advocacy endeavors. I do hope that no one removes the information about the degree, but I can't control that if it happens, of course.

I am happy with any and all phrasing that anyone wants to do from here, for what it's worth. My goal was simply to remove that orphan tag from the Gaffney article and allow parents of children with Down Syndrome to find an easy wiki-link to the Gaffney Wikipedia article from this very informative and well-cited article. Her wiki-linked Wikipedia article, in turn, links to the Karen Gaffney Foundation, and other websites that speak of her many accomplishments and efforts. I chose not to repeat the information available from the Gaffney article here, but maybe it's well worth talking about her roles as a sports figure, speaker, and advocate at length in this bulleted list, even if it duplicates information available elsewhere in Wikipedia. That's a call that someone else can make. My main goal was establishing some links in related articles.

I do normally try to pre-talk additions I make to well-developed articles like this one, before I make them, just out of respect for the article and for the community that created it. I just seriously ran out of time last night, getting more than I bargained for, time-wise, trying to deal with both the lack of available press citations and trying to get that orphan tag removed. This is why I am talking it after-the-fact like this today.

Whatever anyone wants to say about her, or how they want to say it, she is definitely an inspiration to many, in all that she stands for and all that she does! I am very, very glad that someone on the watchlist for this article concurred with her addition to this list! Thank you for that concurrence, even though I did not pre-talk my edit before I submitted the new material! Maura Driscoll (talk) 16:07, 11 May 2013 (UTC)

I don't think you need to pre-talk edits. I only occasionally do so when I don't feel I know or have enough information, or simply don't care to edit the article myself, or that the edit is more complex and more effort than I can put in at the moment. Centerone (talk) 20:48, 11 May 2013 (UTC)

Thanks Centerone. I thought you were going to take the honorary degree part out, and I know that was important to the parents of my favorite 8-year-old, and might be important to her, also, in about 10 years. Sorry if I over-talked this. I just really wanted the degree to stay in, so I'm afraid I over-argued for it to be kept! I'm still a Wikipedia newbie, by the way, about 3 months into it. Appreciate the comments! Maura Driscoll (talk) 04:08, 27 May 2013 (UTC)

Ethical issues: one-sided?

Hi, I can hardly believe that the ethical issues a viewed as (relatively) one-sided as the seem to me. But I don't know that much about this discussion in science, who does? Cheers, Eltirion (talk) 16:10, 1 June 2013 (UTC)

Huh? WHat are you talking about? More than one side is presented in that section, referenced. What is your objection? What would you do to improve the section? Centerone (talk) 04:31, 2 June 2013 (UTC)

== Abbreviating ID

What's with this 'MR' stuff I'm seeing in the article? Is this an attempt to be politically correct? RocketLauncher2 (talk) 22:14, 15 June 2013 (UTC)

An attempt to be politically correct would use "intellectual disability", MR is probably just used to save space and improve readability. Canada Hky (talk) 23:59, 15 June 2013 (UTC)

What is wrong with people?! Why use a word which IS derogatory? Shame on you Wikipedia you should know better! There are plenty of other words you can use. There is NO good reason to use MR. I want to see it gone ASAP. I'm appalled this is NOT acceptable.

"A large proportion of individuals with Down syndrome have a severe degree of intellectual disability."[1]

I don't have access to the piece that this quote is referenced from but it seems to conflict with information later in the article which discusses cognitive delays typically ranging in the mild to moderate range. I'm not necessarily doubting the reference, but as it is written seems to be in conflict with widely accepted norms regarding the degree of intellectual disability people with Down syndrome are known to possess. It should be either be removed, rechecked,or clarified.Catamounter (talk) 14:01, 20 March 2013 (UTC)

I don't have time to check this out, but if someone has access to the reference, the contexts for "large" and "severe" should be checked. Large is a bit ambiguous.Novangelis (talk) 14:52, 20 March 2013 (UTC)

The exact wording used in the book is "...the majority of sufferers have severe learning disabilities. There is however a large range of IQ and of ability in daily living skills in the population of people with Down's syndrome." (page 63) Fvasconcellos (t·c) 16:32, 20 March 2013 (UTC)

This issue should also be viewed from a statistical point of view. According to the article, the average IQ for DS individuals is 50 but some in the plus-2 or plus-3-sigma range approach normal non-DS IQ levels, i.e., 100. Conversely, minus-2-sigma individuals are severely and irrevocably disabled. Individuals on the plus side have been visible as tv or movie actors, for example. These few are pretty much able to live independently and fend for themselves. Marriage is problematical but is not out of the question. Virgil H. Soule (talk) 16:28, 30 April 2013 (UTC)

infobox image

I'm not understanding how the image in the infobox improves the article. What is it's relevance here?.--RadioFan (talk) 00:38, 29 June 2013 (UTC)

Suggested addition to "Notable persons"

I'm not sure if I'm putting this in the right place, but I'm not sure where else to put it.

Tim Harris, a restaurant owner with Down's syndrome: and they made among the geese and found their peace, yet it is for the DNA full genetics screening and it may be that seven hundred years ago when there was the wedding and came the men too from close to the river to the House. — Preceding unsigned comment added by 77.54.140.184 (talk) 18:13, 1 October 2013 (UTC)

http://timsplaceabq.com/about-tim — Preceding unsigned comment added by 68.188.150.52 (talk) 15:34, 17 July 2013 (UTC) May the saints in whom his little mother believed reveal to him the truth . — Preceding unsigned comment added by 77.54.140.184 (talk) 18:05, 1 October 2013 (UTC)

Genocide

According to the article, upwards of 90% of pregnancies diagnosed with Down's syndrome are terminated. Trisomy 21 is a genetic defect that occurs randomly and does not run in families. Therefore, the practice is intended to eliminate a class of undesirable individuals from the population and could be viewed as a genocide. Amniocentesis is widely used and has an enormous potential for misuse. This point of view should be presented in the article. Virgil H. Soule (talk) 16:28, 30 April 2013 (UTC)

The practice is intended to eliminate one undesired fetus. The decisions are made by individuals for their own personal reasons, which vary. The decision maker is free to not abort. The decision maker's intent is limited in scope, it's not to compel all Trisomies (21 and/or the others) to be aborted. There is no powerful group trying to promote compulsory Trisomy abortion. The idea that aborting deformities amounts to genocide is extremely weak for these and other reasons. Bringing that idea into the article would clearly be POV and coming from an anti-abortion agenda. It's only very incidental to the topic, i.e. it's off topic. This article is about Trisomy 21, not about abortion and strained implications of it. Maybe your perspective ("aborting deformities amounts to genocide") would be more on-topic in another article?

108.7.14.153 (talk) 09:00, 26 May 2013 (UTC)

I agree with the above comment. Adding a reference to genocide would be an interpretation of the data, and could be seen as POV content from sanctity of life supporters. Best to leave the data as it is and allow the reader to determine what the implications are. Blendenzo (talk) 19:35, 1 October 2013 (UTC)

There are please standing bodies to deal with any suspicion of Genocide, real Oriental foetses might be at risk from the abortion policu on Down´s syndrome foetuses real Orientals have sometimes minute slits and contrary to claims have seen perfectly on them all their lives today this strain õf pure Han Chinese and Siberian Hunnic type may be disappearing due to this and it is unclear if socalled modern art restoration does not widen eyes to suit Western taste, and if the narrow slit strain which opens like pin-holes and is of the Huns has not been subject to removal from the gene pool by abortion policies, please check for missing assomatic strain mt and Y origin in case the respective mt and Y have disappeared due nto such practices. — Preceding unsigned comment added by 77.54.140.184 (talk) 18:00, 1 October 2013 (UTC)

1) To the poster just above me: HUH? Your statement is hard to follow. Please try to take your time in composing things in order to be more clear, if you aren't just babbling nonsense. I will take the difficulty as a simple language barrier at the moment, so thank you for participating. 2) To the original poster "Genocide is "the deliberate and systematic destruction, in whole or in part, of an ethnic, racial, caste, religious, or national group"" Since this is not an ethnic, racial, caste, religious, or national group this is not genocide. Centerone (talk) 01:43, 2 October 2013 (UTC)

I will have to come back to add more information on this, but for now I wanted to suggest instead of "genocide," that the United's States history of Eugenics in the 1920's and 1930's can be touched upon in this area. Granted, the aborting of fetuses is always a controversial topic regardless of the reason why, however, there is a strong ethical debate that goes on in regards to aborting fetuses with trisomy 21. Some view it as a form of "positive eugenics." InfinityBird (talk) 05:37, 10 October 2013 (UTC)

Edit request on 21 October 2013

There is the paragraph:

"In March 2012, the Guinness Book of Records website listed Joyce Greenman, now 87, of London, who was born on March 14, 1925, as the oldest living person with Down syndrome, (recorded correct and checked as of 29 April 2008)."

It is the year 2013, October, and therefore the part "now 87" is quite strange. Maybe just delete it or change it to "at that time 87 years old" or something similar or what you may think is for the best.

I am not a native English speaker and because of this it is possible, that I just do not understand the "now 87" correctly and it is may be in fact not misleading or plainly wrong at all.

I hope that my request is understandable for you. (I will try to improve my English.)

Thanks for Your work and Your effort to inform the people, who are interested in learning more about the Down syndrome!

Best regards A Wikipedia-Reader 82.113.98.62 (talk) 17:51, 21 October 2013 (UTC)

Your request is very understandable, and you're right. Statements of current facts soon lapse, and should always have an "as of" qualifier. But the statement was in the wrong part of the article, and in any case this article only lists people who have their own Wikipedia article, which would be unlikely for Joyce because of WP:One event. So I've just deleted the sentence. Thanks very much. --Stfg (talk) 21:03, 21 October 2013 (UTC)

Are the abortion figures credible?

I don't have access to the full versions of the cited survey papers, but is a 92% figure right and responsible? Googling for information suggests the real figure is nearer 30-40% in the USA. e.g. this 2006 article says there are 4,370 live births when the expectation is 6,150. Other country estimates are 32-85%. A 2003 CDC article gives 11.8 live DS births/10,000, also about 4,000 total. If the rate were 92% this would imply 60,000 DS conceptions or 1.5% of all births (or rather more since there's a high miscarriage rate). A figure for the UK suggests there were 743 births after 1,843 diagnoses of which 1,422 would otherwise have been born (so about 37%). This page says the 90% figure is inaccurate. How quickly things are changing I don't know but these numbers seem suspicious. Chris55 (talk) 18:53, 1 November 2013 (UTC)

Ok, on doing a little more research, I realise that I've omitted a very important factor from this. This article points out that less than 1 in 10 women who are offered amniocentesis actually take the offer, due partly to the perceived risks of the procedure. For that reason people are not offered it until after less invasive screening shows positive so those who take the offer have thought through things carefully when they opt for it. In other words, they've already taken the decision before the test. There is also the possibility that they haven't been offered the test in the first place - women under 35 in the UK for instance who haven't been screened, or those without the necessary insurance in the US. In fact, the article quoted suggests the risk of the procedure is less than previously thought. I don't know whether that's true or not. Chris55 (talk) 15:51, 3 November 2013 (UTC)

Reviews

• http://www.ncbi.nlm.nih.gov/pubmed/23381164
• Hickey, F (2012). "Medical update for children with Down syndrome for the pediatrician and family practitioner". Advances in pediatrics. 59 (1): 137–57. PMID 22789577. {{cite journal}}: Unknown parameter |coauthors= ignored (|author= suggested) (help)

Doc James (talk · contribs · email) (if I write on your page reply on mine) 02:05, 4 January 2014 (UTC)

Credit for discovery of trisomy 21

I have made two small edits, in the Intro and in History, about who is credited with the discovery of trisomy 21. These are motivated by recent articles (referenced) indicating that credit belongs to Marthe Gautier and not Jerome Lejeune. Rosieredfield (talk) 10:55, 5 February 2014 (UTC)

Would you happen to have a better source? We would prefer to use something published by the Scientific Council. Papers sometimes / often get things a little wrong. Doc James (talk · contribs · email) (if I write on your page reply on mine) 15:07, 5 February 2014 (UTC)

Alzheimer's

High quality refs do not say it is AD but dementia of the AD type. Thus so should we. Doc James (talk · contribs · email) (if I write on your page reply on mine) 16:22, 5 February 2014 (UTC)

I didn't got you? OccultZone (Talk) 16:35, 5 February 2014 (UTC)

It is not conclusion that the dementia those with DS get is AD. For example this ref says "a type of dementia that's either the same as or very similar to Alzheimer's disease" [1] Doc James (talk · contribs · email) (if I write on your page reply on mine) 16:48, 5 February 2014 (UTC)

Amazing. Kindly re-check whole page, for better. OccultZone (Talk) 17:03, 5 February 2014 (UTC)

Yes. Am still working on it. Hope to bring it to WP:Good article status followed by translation into as many other languages as possible as per here [2] Doc James (talk · contribs · email) (if I write on your page reply on mine) 18:11, 5 February 2014 (UTC)

Cardiac defects

Hey Doc, I'd always thought the T21 cardiac defects varied in type so much because they are Cushion defects? Not sure if I have it right but thought I'd add it here (saw the page for GA status and didn't want to mess with it right now). Ian Furst (talk) 02:55, 7 February 2014 (UTC)

That is what Atrioventricular septal defect are isn't it? Doc James (talk · contribs · email) (if I write on your page reply on mine) 03:16, 7 February 2014 (UTC)

Yup - saw the link you had in the article and assumed it was for AV defects specifically, rather than the entire class. Unless I'm misreading it, [[Atrioventricular cushions and Atrioventricular septal defect are the same and should be merged??? Ian Furst (talk) 03:21, 7 February 2014 (UTC) Disregard, one's the embryology of it and the other is the disorder. Sorry for the confusion. Ian Furst (talk) 03:22, 7 February 2014 (UTC)

Yup exactly. Ah embryology. So long ago. Doc James (talk · contribs · email) (if I write on your page reply on mine) 03:23, 7 February 2014 (UTC)

Just a distant nightmare memory now :-) 209.82.46.50 (talk) 14:30, 7 February 2014 (UTC)

Generally happy

"Generally happy" This ref says "tend to be happy" [3] Of course they are not always happy. However we mention that depression is documented in the next part of the sentence. Doc James (talk · contribs · email) (if I write on your page reply on mine) 17:13, 5 February 2014 (UTC)

Sorry - I wasn't trying to ignore your comments. Would you mind giving a look to the reference that I just added? It addresses how the idea that people with Down syndrome are always/usually happy doesn't reflect actual evidence, and can be very damaging. Please let me know what you think!National Down Syndrome Society 17:41, 5 February 2014 (UTC) — Preceding unsigned comment added by Ssjs2010 (talk •contribs) (Added from my talk page) Doc James (talk · contribs · email) (if I write on your page reply on mine) 17:48, 5 February 2014 (UTC)

Yes agree they have a full range of emotions and I think that is important to state. Most people tend to be happy. Those with DS are also generally happy. This is important to realize clinically as if someone with DS is not happy this may not be due to a psychological issue but them having something physically wrong. It could of course also be due to a psychiatric reason. Doc James (talk · contribs · email) (if I write on your page reply on mine) 17:48, 5 February 2014 (UTC)

Agreed that they are full of emotions, but they don't care about others emotions. They feel that they own the world now, and that they can do anything that they want, it is not just psychological disorder but also mental, later on it becomes worse.... Yes we cannot write like this, but we should cite something similar. Most of the source cite "Attitude towards down syndrome", means how you should treat a down syndrome patient, it must be bigger issue? OccultZone (Talk) 18:28, 7 February 2014 (UTC)

Yes many have autism which includes an inability to understand others point of view. We state that their is a higher risk of autism in DS. Doc James (talk · contribs · email) (if I write on your page reply on mine) 18:59, 7 February 2014 (UTC)

Summary of prognosis

I propose that in the lead we state "a few attend secondary education" rather than " some attend post-secondary programs" Per this ref [4] which states "most children with DS do not graduate from high school and still fewer go to college" Thoughts? Doc James (talk · contribs · email) (if I write on your page reply on mine) 16:55, 5 February 2014 (UTC)

The ref says around 8.5% of students with intellectual disability graduate from highschool.[5] Doc James (talk · contribs · email) (if I write on your page reply on mine) 21:19, 6 February 2014 (UTC)

This ref however gives 39% for the US in 2012 [6] for intellectual disability. Does not deal specifically with DS though. Doc James (talk · contribs · email) (if I write on your page reply on mine) 21:29, 6 February 2014 (UTC)

This says less than 1% have regular jobs [7] and this says 1 in 5 work.[8] The number who attend secondary education appears to be in the case report range. I wonder how many of these are mosaic rather than full cases? Doc James (talk · contribs · email) (if I write on your page reply on mine) 21:45, 7 February 2014 (UTC)

18% of those with disabilities employed in the USA [9] Doc James (talk · contribs · email) (if I write on your page reply on mine) 23:38, 7 February 2014 (UTC)

10% in Rome with work [10] 2012 presentation gives similar numbers [11] Doc James (talk · contribs · email) (if I write on your page reply on mine) 23:42, 7 February 2014 (UTC)

Semi-protected edit request on 25 February 2014

Please delete "the drawing of down syndrome". My boyfriend upload my picture to wikipedia. Luo0301 (talk) 17:07, 25 February 2014 (UTC)

This edit request itself appears to be a joke, and is itself an abuse of the system. Centerone (talk) 17:17, 25 February 2014 (UTC)

 Not done - Arjayay (talk) 17:19, 25 February 2014 (UTC)

IQ

The concept of IQ scores is one of much debate. While some swear by them, they are considered purely arbitrary by others. Could/should the subject of IQ scores of those with "intellectual disabilities" be demoted from the first paragraph? Caroline Collins (talk) 01:22, 4 October 2013 (UTC)

While there are many problems with IQ it is still a commonly used and understood scoring system. Doc James (talk · contribs · email) (if I write on your page reply on mine) 06:33, 10 October 2013 (UTC)

The correct title for this section is =Intelligence Quotient=. As children we should have learned that a quotient is the result of division. If 8 is divided by 2, the answer 4 is the quotient. The history of scaling and measuring "intelligence" begins at the turn of the 20th century with assessment of children. Alfed Binet proposed the concep of a Mental Age - a concept acturarily derived by research with large samples - into which the Actual age could be divided. That resulted in a Quotient.

Having done so more than a quarter century, I know that a decent living can be made from measuring intelligence. Sadly, I've witnessed academic and clinical colleagues who routinely baffled people with measurement BS, to earn a living. Ideally, a clinical instrument should exist that was derived specifically for assessment of persons with Down Syndrome. When the role of age level loses relevance, the concept of IQ needs to be replaced with some other metrical term. When I was age 50, I read at the average level of persons aged 100. --Edward Chilton — Preceding unsigned comment added by 24.180.67.151 (talk) 02:43, 12 March 2014 (UTC)