Talk:Charlie Gard case/Archive 1

Archive 1

Archive 2

Merge page

Merge Page with Charlie Gard? — Preceding unsigned comment added by 195.60.233.178 (talk) 09:53, 4 July 2017 (UTC)

There is no such entry in Wikipedia. Go to Charlie Gard and you'll land at Charlie Gard treatment controversy. Bmclaughlin9 (talk) 11:02, 4 July 2017 (UTC)

Current event

Since this is a current story, shouldn't there be one of those headers that has a clock symbol on it, like for when a person just died? — Preceding unsigned comment added by 76.254.25.55 (talk) 14:25, 4 July 2017 (UTC)

That notice is only added when lots of editors are working on a WP entry at the same time. This isn't being edited that often. Bmclaughlin9 (talk) 14:47, 4 July 2017 (UTC)

Problems

DoctorBiochemistry is an WP:SPA who has been edit-warring badly-sourced content into this high-profile article. I have raised the alarm at WT:MED. Alexbrn (talk) 18:26, 9 July 2017 (UTC)

[1]blocked--Ozzie10aaaa (talk) 02:12, 11 July 2017 (UTC)

Thursday?

[2]--Ozzie10aaaa (talk) 02:11, 11 July 2017 (UTC)

I had already added some information about this to the subsection that covers the legal aspects. I have expanded on that slightly and added a summary of this to the lead. Drchriswilliams (talk) 06:12, 11 July 2017 (UTC)

Clarity and Timeliness

The article currently mentions "experimental treatment", right after referring to an Italian hospital. I read that they were trying to get experimental treatment at a US hospital. What is accurate? And is there any information on what that treatment might be?

Mitochondrial DNA depletion syndrome would be the article to look at, I'm considering adding [3](posted here[4])--Ozzie10aaaa (talk) 10:25, 11 July 2017 (UTC)

Another limit on benefits of nucleoside-therapy

The following discussion is closed. Please do not modify it. Subsequent comments should be made on the appropriate discussion page. No further edits should be made to this discussion.

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As written, the article currently points out that nucleosides do not easily cross the blood-brain barrier, so benefit of nucleoside-therapy for a brain-damaged patient like little Charlie would be limited. But there's a more fundamental problem: nucleoside therapy, in which the physician provides the nucleosides which the patient's body cannot make, might slow down the damage which the deficiency is causing (if the blood-brain-barrier problem could be solved somehow), but could not possibly REPAIR the damage which the deficiency has ALREADY done. So, giving little Charlie nucleoside-therapy would be like locking the barn door after the horse has already run away, or like giving a scurvy patient vitamin-C after he has already lost all his teeth. If someone can find a reliable online source for this info, it would be an informative addition to the article. HandsomeMrToad (talk) 22:55, 8 July 2017 (UTC)

What do you mean “'could not possibly REPAIR the damage which the deficiency has ALREADY done”? All that is know is that those organs so affected, are slow to develop. That is not the same thing as ' damage' which some doctors are beginning to appreciate. Critics have point out that this child's skull measurements have not increased. No one has asked if this child really need that amount of grey matter at his age. Read : Can you live a normal life with half a brain? and How much of the brain can a person do without. However. I would agree that if the neural networks for vision etc., are prevented from developing by denying stimulus (in normal healthy subjects), (they did this with lab animals) then the animal never gains normal functioning. Which is why this is so very urgent. The hospital 'management' is letting the fallacy of argumentum ad ignorantiam get its knickers in a twist. Something, that in the 21 St Century we thought we had left behind us. So this case is way more important and notable than it may first appear. Aspro (talk) 22:36, 10 July 2017 (UTC)

The discussion above is closed. Please do not modify it. Subsequent comments should be made on the appropriate discussion page. No further edits should be made to this discussion.

@Jytdog: Why did you hat this as "NOTFORUM", when it includes the comment "If someone can find a reliable online source for this info, it would be an informative addition to the article."? Andy Mabbett (Pigsonthewing); Talk to Andy; Andy's edits 15:02, 11 July 2017 (UTC)

because almost everything it is people giving their opinion about the matter. as is obvious. Jytdog (talk) 15:43, 11 July 2017 (UTC)

Rename article

By analogy with Joseph Maraachli case and Ashya King case, wouldn't it be a more neutral article title to move this to Charlie Gard case? Bondegezou (talk) 11:23, 12 July 2017 (UTC)

agree, however more opinions needed--Ozzie10aaaa (talk) 15:59, 12 July 2017 (UTC)

In the absence of any further comment, I have now moved the article. Bondegezou (talk) 14:15, 17 July 2017 (UTC)

looks good--Ozzie10aaaa (talk) 11:32, 18 July 2017 (UTC)

How to cover nucleoside therapy?

The following discussion is closed. Please do not modify it. Subsequent comments should be made on the appropriate discussion page. No further edits should be made to this discussion.

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I added the following to the article, citing the judge's initial ruling:

Nucleoside therapy has been used with 18 patients with a less severe mitochondrial condition involving the TK2 mutation, none of whom had encephalopathy. There are not yet any published case studies on any of these patients. Experiments in mice with a TK2 mutation were reported in legal proceedings around Charlie Gard to show an increased lifespan of "between 13 and 36 days against a normal mouse lifespan of two years. In other words [...] a little over 4% of normal lifespan." Nucleoside therapy has not been used in humans or in mice for a RRM2B mutation and the drugs involved are thought not to cross the blood-brain barrier, so would not be able to treat encephalopathy.

Alexbrn removed this as not meeting WP:MEDRS. It doesn't. However, I added it as important context for why the judge ruled as he did, and I think it meets WikiProject Law's requirements on RS! How do we explain enough about the detail of the legal decision made, which involves medical issues, without being misleading in our presentation of medical information? I think we need to say something: I don't mind not using the text I wrote, but I think something is needed saying (a) this therapy's past use has been for a different mutation; (b) there are particular reasons to think this won't be applicable in CG's case involving encephalopathy; and (c) the evidence there is even for TK2 treatment is small and suggests limited results. (Indeed, on that last point, the fact that there's no WP:MEDRS-approvable material is kind of the point!)

There is some contentious editing of this article with some editors keener to stress potential positive benefits of nucleoside treatment, but again facing WP:MEDRS issues. I think the way forward there is to refer, as I did, to the judge's ruling because that contextualises the evidence in the context of this case.

Others' input most welcome. Bondegezou (talk) 15:53, 12 July 2017 (UTC)

though I have NOT edited(actually 1 2 revert) this article on purpose, Id agree w/ [5] Alexbrn edit...IMO--Ozzie10aaaa (talk) 15:58, 12 July 2017 (UTC)

I've added some different text to the first paragraph of the Legal background subsection taking (more!) care to not fall foul of WP:MEDRS while still expanding on the judge's rationale. See what y'all think. Bondegezou (talk) 16:05, 12 July 2017 (UTC)

• User:DoctorBiochemistry. You have not participated here at the talk page at all. Please begin to do so. Your edits:
  • this
  • this
  • this

violate policy in several ways.

• • You left content completely unsourced
  • You put a "reference" behind content that discusses 2017 events, but the "ref" dates from 2013. This is impossible.
  • The content is promotional with regard to this experimental therapy, emphasizing that it is "natural" and a "nutrient" and other stuff that has nothing to do with the issues in this case, and is altogether WP:UNDUE
  • In the (unsourced) content added about "olicited by Charlie Gard's parents" as well as the later argumentation and SYN-violating content about "there are human MDS patients in the US and other countries who have been allowed the compassionate use of nucleoside supplements." you are neglecting the fact that the medical team was initially ready to try this and was seeking ethical approval to do so.
  • Some of the references was poor, as has already been raised with you at your talk page.

Please address these concerns, and please do so here on the Talk page. Jytdog (talk) 16:09, 12 July 2017 (UTC)

@Jytdog:he's reverted the article twice??--Ozzie10aaaa (talk) 16:11, 12 July 2017 (UTC)

Hi just found there is a talk page, I agree to keep discussion hereDoctorBiochemistry (talk) 16:18, 12 July 2017 (UTC)

The current affirmation: "had been used in babies only a few times and had shown little to no efficacy," is unsourced and incorrect. The treatemt has been tried in children and adults with different kinds of MDS, it is referenced in the summary of the court.DoctorBiochemistry (talk) 16:18, 12 July 2017 (UTC)

you need consensus(and to follow MEDRS) your talk page[6] has plenty of good information, please follow--Ozzie10aaaa (talk) 16:35, 12 July 2017 (UTC)

On that last point, here's a suggestion... Could we say: "Nucleoside therapy has been used with 18 patients with a less severe mitochondrial condition involving the TK2 mutation, none of whom had encephalopathy. There are not yet any published case studies on any of these patients." Those sentences make no treatment efficacy claims, so might be OK under WP:MEDRS?

With respect to efficacy, could we phrase something that stresses this is the judge's opinion: "In his judgement, the judge noted that the evidence made available to him suggested that there would be no or only minimal benefit from nucleoside therapy." That doesn't seem quite right, but phrasing along those lines? Bondegezou (talk) 16:23, 12 July 2017 (UTC)

The condition in newborns, especially when it is caused by mutations in both alleles, is severe. Comparing treating a person in that situation, to treating someone with adult onset (where the condition is not fatal, at least not rapidly so), is not valid, and getting into the weeds on the whole background of this experimental therapy and the variants of MDDS that people who have received it have had, is UNDUE. The relevant thing to discuss in this article is experimental treatments in similar newborns. What the judge said accurately summarizes the literature and there is no need to attribute. Jytdog (talk) 17:09, 12 July 2017 (UTC)

Hi Jytdog, the child Arturito Estopinan had early-onset TK2 deficiency, and started the nucleoside therapy aged 1 year old when he was totally unable to move and breathe by himself.

I would like to know what's wrong with the following paragraph: "As of 2017, there are only experimental treatments[review source] for mitochondrial diseases, among them, the so-called "nucleoside bypass therapy"[review source] solicited by Charlie Gard's parents. The treatment consists in the oral supplementation with natural deoxynuclosides, which are converted by the body to nucleotides in order to sustain DNA synthesis. Nucleotides and nucleosides are semiessential nutrients[review source] used as dietary supplements, but are not yet approved for MDS treatment. There are human MDS patients in the US and other countries who have been allowed the compassionate use of nucleoside supplements" This information is correct and it's not biased. There are no statements about the benefits or not (although in the summary there are this sort of statements). Adding a citation to the Washington post article talking about Arturito Estopinan, the only known patient under this therapy it's not off the topic, he is mentioned in the summary and in the press, but we can keep it out. However, the following sentence: "there were only experimental treatments for MDDS that had been used in babies only a few times and had shown little to no efficacy" is totally incorrect and unsourced, it should be removed. — Preceding unsigned comment added by DoctorBiochemistry (talk • contribs) 20:59, 12 July 2017 (UTC)

The discussion above is closed. Please do not modify it. Subsequent comments should be made on the appropriate discussion page. No further edits should be made to this discussion.

Conflict of interest does not just affect us

"On 13 July he stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) or even read the Judge’s decision made on 11 April. Further, GOSH was concerned to hear the Professor state, for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie."[7]

WOW Doc James (talk · contribs · email) 23:53, 24 July 2017 (UTC)

Thanks for pulling that out. It is worth nothing that scientists in spain and italy were saying the same thing. but he appears to have pushed the hardest. I am a big fan of university scientists turning their lab work into products that benefit people, but they 'have to be really rigorous about disclosing COI every step of the way. Jytdog (talk) 04:11, 25 July 2017 (UTC)

Article size

@Jytdog: A number of your edits have been cutting detail from this article based on a WP:NOTNEWS/WP:UNDUE argument: [8], [9], [10]. I know you didn't previously even think we should have this article, but you withdrew your AfD, so if we agree that this article should exist, does not WP:NOTPAPER apply? We have this article: well-reported material should be included. Bondegezou (talk) 16:53, 21 July 2017 (UTC)

I withdrew the AfD which means I agree the article should exist. That does not mean that we update it every time there is a WP:FART. Wikipedia is not a newspaper. We are an encyclopedia; that means we think about what is likely to be of enduring importance - the question to ask is not "what happened today?" but rather, "what will matter 5 years from now?" We cannot know of course, but we can limit what we add to high level, milestone events. The date the US doctor arrived in London is trivia. Bills being proposed to make him a US citizen is trivia, etc. Jytdog (talk) 20:33, 21 July 2017 (UTC)

As you say, it is hard to judge what will matter 5 years from now. So, we have to fall back on consensus. It seems to me that the consensus has repeatedly been for a bit more detail than would be your preference. I thought, therefore, that you might want to think about whether you've judged the level of detail desired correctly. Personally, I think details of dates, like when the US doctor came to the UK, do matter when making sense of events. Bondegezou (talk) 10:34, 25 July 2017 (UTC)

Well it is obvious that he went there, as he examined the child. the week in which he did that, as well. Maybe in a few months we can revisit and see what details matter. The main thing I wanted to avoid was this getting tons of blow-by-blow trivia added as the situation evolved. I am guessing there will be three more whooshes of interest (when he dies, when the funeral happens, and when/if the parents launch the nonprofit with the gofundme money) and after all that we should be able to start editing this more normally. Jytdog (talk) 16:57, 25 July 2017 (UTC)

Date of Charlie's death

It was mentioned on the news tonight (July 28 2017) that Chalie Gard had died, following his short life. Surely his date of death should now go in the article.Vorbee (talk) 17:27, 28 July 2017 (UTC)

WP:ITN/RD

• I have nominated this article for inclusion on the main page in ITN following Gard's death. However, the article, despite incorporating ample biographical detail, fails to meet the rigorous criteria for Recent Deaths for one simple reason - the title means that Gard himself is not technically the subject of a Wikipedia article. A move to Charlie Gard and minor copyedits would resolve this problem. However, such a move would be a reversal of previous moves per earlier entries on the talk page here. Thus, I want to know how other editors feel about such a move before taking any such action, bold or otherwise. Stormy clouds (talk) 19:52, 28 July 2017 (UTC)

This article is not about him; the move would not be appropriate. Jytdog (talk) 19:59, 28 July 2017 (UTC)

For your information though, using the Charlie Gard case redirect, he seems to have so far been accepted for inclusion in Deaths in 2017, judging by the consensus indicated on the talk page. If you are so inclined, and feel strongly enough about this, please visit and give an opinion: the consensus is a thin one, as at this time stamp. Ref ^(chew)(do) 21:50, 28 July 2017 (UTC)

death age

Some folks seem to want to use the template:Death date and age template, but this is done by year and says his age was "0", which is just pointless (not to mention bad rounding). Unless somebody can figure out how to make this read out in months, there is no point in using it, in my view. Jytdog (talk) 22:01, 28 July 2017 (UTC)

handled here. yay. Jytdog (talk) 22:05, 28 July 2017 (UTC)

Alasdair Seton-Marsden

This article currently makes no mention of Alasdair Seton-Marsden, who has been acting as spokesman for the parents, when speaking to the media, and from whom they are now reportedly distancing themselves. Andy Mabbett (Pigsonthewing); Talk to Andy; Andy's edits 13:18, 23 July 2017 (UTC)

That's a good thing, since it would just add transient drama that has nothing to do with the core, encyclopedic issues here. Jytdog (talk) 21:10, 23 July 2017 (UTC)

Far from it. It's clear that he played both a prominent role, and had links to other key actors. Andy Mabbett (Pigsonthewing); Talk to Andy; Andy's edits 16:54, 24 July 2017 (UTC)

Particularly relevant coverage includes:

• https://www.theguardian.com/commentisfree/2017/jul/22/charlie-gard-world-turned-medical-experts
• http://www.telegraph.co.uk/news/2017/07/23/charlie-gards-parents-extremely-upset-public-backlash/

-- Andy Mabbett (Pigsonthewing); Talk to Andy; Andy's edits 16:44, 26 July 2017 (UTC)

I see what you mean. It will be difficult to generate NPOV content about this and keep it that way; it seems that he was at center of some of the most inflammatory politics around this in the UK and there are questions of the parents' relationship with him. That said it seems we should try..... Jytdog (talk) 17:08, 26 July 2017 (UTC)

I am somewhat scared of drafting this content as it wades into contemporary politics which I do not like to edit about. I will offer a ref - there was a great show on On the media today about this case, contrasting right wing political commentary about the case in the US with ring wing commentary in the UK -- ref. Jytdog (talk) 04:32, 29 July 2017 (UTC)

Hirano content

The following was added today, as part of this diff.

This is problematic to me for a couple of reasons.

1. it is a lot of WEIGHT on Hirano, who is not that important a player
2. it is all out of chronological order and in my confuses some things.
3. as i noted it above, it is remarkable that GOSH talked about this case with Hirano in December, and invited him to come and examine the child in January...and the stuff in paragraph 10 is especially .. difficult to read. But this has not been discussed in secondary sources.

On a more minor level, style-wise are small issues with repeating refs and how the child is referred to.

According to GOSH, Hirano had previously been invited to assess Charlie Gard in January when the hospital had been considering nucleoside treatment. Hirano had also been one of the co-signatories of a letter on 6 July which asserted that nucleoside treatment was more beneficial than he had previously thought based on unpublished laboratory evidence which had prompted the case to return to the High Court.

References

- Jytdog (talk) 17:02, 27 July 2017 (UTC)

Am interested in folks thoughts on this... Jytdog (talk) 18:53, 27 July 2017 (UTC)

Apologies for my poor writing. I didn't intend to put undue weight on Hirano but I felt that currently the readers lacks context as it seems like Hirano suddenly got involved in July when in fact he had been consulted as early as January. One of the main reasons the parents had fought this case was the "promise" of the nucleoside therapy for which Hirano was the biggest proponent and he seems to be the main doctor that they consulted also and was the main reason why they withdrew their case.

The other thing unclear in the article is the reason for why the case returned to the High Court with the vague "in light of claims of new evidence", some context would be beneficial. Especially as above there is some confusion about which letter was which. I can find content but am not best at integrating so help in this regard would be welcomed. Some sources that could be useful in the future to use. Sources discussing Hirano:[[11]], [[12]]. BBC summary of the case: [[13]] Cowlibob (talk) 10:11, 28 July 2017 (UTC)

I agree this material could be integrated better (chronologically), but I think this is useful content once reworked. It doesn't seem undue weight on Hirano given his role in the case. I concur that secondary source coverage on Jytdog's third point would be an improvement. It's a difficult one: we can use primary sources, so I'd leave it in, but I don't feel strongly either way on that. Bondegezou (talk) 10:40, 28 July 2017 (UTC)

I've added the stuff about the letter that we discussed above, in this diff. Jytdog (talk) 05:12, 29 July 2017 (UTC)

RRM2B AFFECTS mitochondria, but the gene itself is located in the cell nucleus

I am adding a short bit to the "medical background" section explaining that the RRM2B gene is located in the cell nucleus, even though its expression product functions (or in Charlie's case, FAILS to function) in mitochondria. Many genes which code for mitochondrial proteins are located in the cell nucleus, but an uninformed reader might not know this, and might erroneously infer from the name "MITOCHONDRIAL DNA depletion syndrome" that the mutation which is causing Charlie's disease is itself part of his mitochondrial DNA. I hope this will be helpful! HandsomeMrToad (talk) 10:31, 24 July 2017 (UTC)

This information just added about the gene being located in the cell nucleus is quite detailed and technical. I don't think that in the current form that it will help most readers understand the case. Also this text and the references supporting it aren't consistent with the Mitochondrial DNA depletion syndrome article. Drchriswilliams (talk) 13:51, 24 July 2017 (UTC)

The information is detailed--maybe it's not necessary to mention chromosome 8--but I made it short and concise, and I tried to make the technical info clear to an untrained reader, and I think I succeeded, so long as the reader understands that genes code for proteins, which most readers (likely) do. And the source is not inconsistent with the SECTION of the Mitochondrial DNA depletion syndrome article WHICH REFERS TO RRM2D (Mitochondrial_DNA_depletion_syndrome#Encephalomyopathic_form).

I will wait for you to check this and see if you agree; if I don't hear from you about it here in a few days I'll revert to my earlier form but remove the "chromosome 8" part.

Best wishes, HandsomeMrToad (talk) 16:48, 24 July 2017 (UTC)

I don't doubt that you tried to make the technical info clear to untrained readers, but I don't agree that this has been achieved. I don't agree with the previous material being reinstated. To clarify:

1) the material that you added is generic, the sources are 2 academic papers- one published in 2000 and one from 2009.

2) while there is a section of the Mitochondrial DNA depletion syndrome article which refers to RRM2D, it does not contain the description that you added to the Charlie Gard article. There are 17 references on that page and the two which you have added to the Charlie Gard article are not among them. Why no overlap?

2) jytdog also had concerns and removed the material, so you might be better to present a suggested revised version on the talk page. Drchriswilliams (talk) 17:17, 24 July 2017 (UTC)

RE: (1) The two bits of info--that RRM2B is a nuclear gene, and that many mitochondrial proteins are coded by nuclear genes--are very well-known, not disputed by anyone. Who cares which of the zillions of available sources for those facts one uses? I understand that primary sources are not ALWAYS considered good for medical articles, but (as I understand it) the reason for this is that primary sources often refer to model studies about POTENTIAL treatments which are not approved for actual clinical use. The two bits of info are not about potential treatments or actual treatments; they are BACKGROUND and not controvercial.

RE: (2) I didn't read the Wikipedia article on MDDS very carefully. Again, is there any particular reason why the sources should be expected to overlap?

RE: (3) Having said this, I'm coming around to the idea that just saying that the RRM2D gene is located in the nucleus is good enough. So I think I'll back off and leave it as it currently stands. You're probably right that the general point about the many nuclear genes which code for mitochondrial proteins is too much detail and tangential to this article, which is about little Charlie. Back in the day, I did some work for one of the leading world experts on nuclear genes which code for mitochondrial proteins, a prof whose entire multi-decade career from post-doc to prof-emeritus has consisted in identifying these genes and making a long list of them ("found another one today, yippee!") so I have a tendency to start drooling when the subject comes up.

Best wishes, HandsomeMrToad (talk) 03:31, 25 July 2017 (UTC)

Glad you are OK with it now. I updated the RRM2B article today to make it clear what the protein does, and also added a bunch of content to Mitochondrial DNA depletion syndrome. Should have done both a while ago. Jytdog (talk) 03:55, 25 July 2017 (UTC)

I get it that the gene location is a big deal to you, but the medicine part is already hard to understand, and the location of the gene is not relevant to understanding that mutated gene >> bad protein >> no nucleosides for DNA synthesis in mitochondria >>brain damage and can't breathe because of muscle failure ..... which is already hard enough! Jytdog (talk) 04:34, 29 July 2017 (UTC)

About your note that many people are confused about where the gene is... again I get it that you find this confusion particularly heinous and in need of correction, but the location of the gene is not necessary, as others have stated here as well. There is no consensus to include that detail. Jytdog (talk) 04:42, 29 July 2017 (UTC)

A couple of points about the RRM2B gene

Two points about the RRM2B gene:

1. The protein it codes for is not called "the RRM2B protein" which was the term in the article; the protein it codes for is called "p53R2" and is a sub-unit of a complex called "RNR". That's too much detail for the article, but the article should not contain the sophomoric-sounding phrase "the RRM2B protein". I'm replacing that phrase with "the protein which RRM2B codes for". See here: https://ghr.nlm.nih.gov/gene/RRM2B

2. The protein functions in the mitochondria, but the RRM2B gene is part of the DNA in the CELL NUCLEUS. See here: https://ghr.nlm.nih.gov/gene/RRM2B#location It's important to point this out, if only in parentheses, so that the reader does not fall into the error of thinking that the harmful mutation is a mutation in the DNA of the mitochondria.

Best wishes, HandsomeMrToad (talk) 04:31, 29 July 2017 (UTC)

I have moved this up here. Remember the conversation above? I didn't see this before, and I apologize about that, but about #2 you already agreed not to include this. What is the rationale for including this now? How is this important to understanding the medical problem? The change in your item #1 is still understandable to someone with an average education and more accurate, so fine. Jytdog (talk) 04:47, 29 July 2017 (UTC)

RE: "about #2 you already agreed not to include this."

No. I agreed not to include the info that the RRM2B gene is located ON CHROMOSOME NUMBER EIGHT. We SHOULD include the fact that it is located IN THE CELL NUCLEUS. If we don't include THAT, then people assume that the bad mutation is part of the mito DNA, and jump to seriously erroneous conclusions about the disease. Such as, I encountered someone who knew that mito DNA is inherited from the mother, and also assumed that the bad mutation is part of the mito DNA, and therefore inferred that the disease must be inherited from the mother only. This person therefore could not understand how the disease could be autosomal recessive, which is kind of important. A single sentence in parentheses protects against this possible confusion, and does not (IMHO) make the article significantly more complicated, as readers who do not understand what it means will just ignore it.

But I'll wait and see what other editors say before adding it back; I am not looking for an edit-war.

Best wishes, HandsomeMrToad (talk) 04:58, 29 July 2017 (UTC)

Yeah this is hypertechical but I think i figured out a way to add it in without (I hope) confusing the issue further. (diff) Please do not overcomplicate this. If somebody is informed enough to understand "recessive inheritance" they can click a link to learn more about the gene. But whatever. Jytdog (talk) 05:25, 29 July 2017 (UTC)

Your most recent version looks fine to me! Good teamwork. Fun! Thanks. HandsomeMrToad (talk) 05:28, 29 July 2017 (UTC)

unfortunately

• [14]--Ozzie10aaaa (talk) 14:30, 24 July 2017 (UTC)

External links: overviews

I recently added these two links:

• A cruel and ignorant campaign by Melanie Phillips
• Charlie Gard: facts, medicine, and right-wing fictions by Charles Arthur of The Guardian

They have been removed, with edit summary claiming "Opinion pieces can't be used as overviews". This is strange, as not only is it a false claim, but both are reviews of the facts by established journalists (and by journalists for opposite ends of the political spectrum), not op ed. pieces. They should be restored. Andy Mabbett (Pigsonthewing); Talk to Andy; Andy's edits 21:29, 29 July 2017 (UTC)

I am not a big fan of ELs for talking heads like this - I was one of the first reverters. I have proposed a block of content above that incorporates both of these refs as well as a mention of the original spokesman that you wanted. Would you please comment on it? thx Jytdog (talk) 21:33, 29 July 2017 (UTC)

The talking heads

There is a section above about Alasdair Seton-Marsden's involvement. As I noted there I am hesitant to open this can of worms.

Should we?

Here is some draft content to perhaps get things rolling...

The case was the subject of prominent news coverage as it unfolded and the parents used social media to campaign for support. Heated commentary on the case in the media and social media was criticized by Mr. Justice Francis in one of his opinions. The use of social media in this case represents a more general challenge for the medical profession and the field of medical ethics, as parents can use social media to amplify their views and involve the general public, but the medical team is limited in what it can say due to privacy obligations, and public opinion has no place in its decisions or procedures.

According to Melanie Phillips, a UK conservative commentator often aligned with views in the conservative media in the U.S., much of the commentary on the case in the U.S. conservative media as events were unfolding took no regard for the underlying medical issues or the UK legal context of parental responsibility, and was instead based on notions of "parental rights", and used the case in rhetoric intended to persuade the US public to accept conservative positions on the ongoing healthcare reform debate in the United States, as an example of the dangers of "socialized medicine" and of putative "death panels" in action. Parental rights rhetoric was also used by Alasdair Seton-Marsden, who acted as a spokesman for the parents until they distanced themselves from him, who for example called the child a "a prisoner of the state."

References

Again, I am very hesitant, and am OK without any of this, which is endless talking heads discussing other talking heads. I prefer the article remain focused on the actual events and people directly involved. -- Jytdog (talk) 20:27, 29 July 2017 (UTC)

Not a bad start, but it neglects to mention Seton-Marsden's political background, and his UKIP ties. Andy Mabbett (Pigsonthewing); Talk to Andy; Andy's edits 21:31, 29 July 2017 (UTC)

Am trying to make it not too much about the particular people but the issues. If there were an article about him we could WL to it. Do you think he passes N?

Do you think this should go in as is?

What else does it lack or have too much of? Jytdog (talk) 21:35, 29 July 2017 (UTC)

User:Popcornduff you started to introduce the politics etc. What are your thoughts about the above? Jytdog (talk) 06:10, 30 July 2017 (UTC)

Reverting

Jytdog's serial reverting needs to stop so that the article can develop. We now have two people in the article referred to by the surname Gard, and I have never seen a surname used for a baby on Wikipedia.

Because the article is being stymied by repeated reverting (including as I was in the middle of making a change recently), it is missing a lot of information, and contains misunderstandings and a lot of poor writing. Wikipedians are actually quite good at fashioning decent articles out of current events if the usual process is allowed to take place. SarahSV ^(talk) 22:41, 29 July 2017 (UTC)

See above about the child's name. No one has personalized the editing here yet; please don't start doing that. Jytdog (talk) 22:42, 29 July 2017 (UTC)

No, not see above. This is about your reverting and repeated removal of information, which follows an attempt to have the article deleted. If it continues, I'm going to ask for admin assistance. Let other people work on it. SarahSV ^(talk) 22:45, 29 July 2017 (UTC)

Please don't personalize this. Please discuss what to call the child above. Am very comfortable having admins review everyone's behavior here, including yours. Jytdog (talk) 22:46, 29 July 2017 (UTC)

Am very interested to see what you find is incorrect or a misunderstanding here. Lots of people have been watching and working on this, and that would be surprising. So am interested to see that supported. Jytdog (talk) 22:50, 29 July 2017 (UTC)

• Please note WP:3RR: "An editor must not perform more than three reverts on a single page—whether involving the same or different material—within a 24-hour period." SarahSV ^(talk) 20:12, 30 July 2017 (UTC)

Expression of concern

User:NPalgan2 you added content here and then restored it here, about the "expression of concern". per BRD you should have opened a discussion, but I am doing it.

As I noted in when I reverted in this diff series, the edit messed up the sourcing (you are not contesting that, which is good) but more importantly:

• this is the section on the actual litigation - what happened at court
• per the ref you provided, "Charlie Gard's parents have privately expressed their concern after discovering that the lawyer appointed to represent their 11-month-old son in court heads a charity that backs assisted dying. "

In other words, this was not part of the actual litigation and played no part in it. If their legal representative had made some motion to exclude Butler-Cole from the case, this ~might~ make sense to bring in, but they didn't do that.

We have kept this section very clean of commentary and editorializing by the parties involved - it is just presentes the facts of what happened. This would explode and become hard to follow if we add the commentary by the parties involved (and others) as this unfolded.

Does that make sense? Interested in other people's thoughts as well. Jytdog (talk) 22:04, 30 July 2017 (UTC)

All right, but you didn't move it to next to, say, the "The interventions of Hirano and other individuals were criticised by the High Court judge and medical experts for causing delays to the process and giving the parents false hope of a chance of recovery for their child." you removed the parents' reaction entirely, which was the main point of the article. NPalgan2 (talk) 22:29, 30 July 2017 (UTC)

My main concern is that it not clutter up the litigation section. Their feelings about the counsel for the guardian is a small thing in the big picture (we don't say how they felt about many things in this case) but you would have a better case to make putting it there... but I don't think it belongs anywhere. We are trying to be encyclopedic - to capture things on a big scale. I ~think~ your main goal was to make sure the relationship between that attorney and the organizations was noted in the article and I did not contest that. Jytdog (talk) 23:02, 30 July 2017 (UTC)

Jytog, you've been asked to stop reverting. A revert is any undoing of another editor's work. I haven't been counting, but it wouldn't surprise me if you had violated 3RR more than once.

As for the issue, one of the problems with the article is the forcing of issues into these separate sections, then when you dislike something removing it as inappropriate for that section. If the sections are hindering narrative development, they should be removed or changed. SarahSV ^(talk) 23:05, 30 July 2017 (UTC)

SlimVirgin, you have been asked to discuss content. As you know, with "hot" articles like this, one of the difficult things is managing the level of detail. and there has been extensive here on talk about that. Keeping the article encyclopedic is not "hindering narrative development". Please do see your talk page. Jytdog (talk) 23:14, 30 July 2017 (UTC)

Please don't post on my talk page.

Wikipedians are surprisingly good at fashioning narratives out of current events, but your reverting has stymied the process and driven people away. The usual organic development is therefore not taking place.

You tried to have the article deleted, then you removed important details and important parts of the chronology. Now we have these section headings blocking everything, and you're taking advantage by removing things that in your view don't fit inside them. I'm therefore asking you again to stop undoing other people's edits and to allow the article to develop. SarahSV ^(talk) 23:23, 30 July 2017 (UTC)

It is very clear that you are trying to put a frame in place ( I understand how you operate) but the actual history of this article is what it is and the frame falls apart; i have added a lot of content to this article. You continue to make misrepresentations, so be it. I do hope you will contribute your skills to editing and discussing content here on the talk page rather than turning this into a battleground. You are very aware of the difficulties in keeping articles that are "hot" well-focused, as you did at Hypatia transracialism controversy for example. Jytdog (talk) 23:49, 30 July 2017 (UTC)

No, you don't "understand how I operate". And I have no idea what you mean about trying to put a frame in place. I'm asking you to stop reverting, and if you continue I'll report you for edit warring. Here are your edits to the article. Lots are reverts of edits that were helpful. Someone adds something; it's not quite right; someone else tweaks it; someone else moves it; someone adds a heading; and so on. Things often get worse before they get better. It works well with new articles if lots of people are interested. There's no comparison to the Hypatia article, which very few cared about. SarahSV ^(talk) 01:02, 31 July 2017 (UTC)

I am not going to keep running around this tree; I believe you understand exactly what I have written. I understand what you have written. We both understand the issues here. Jytdog (talk) 01:19, 31 July 2017 (UTC)

• Does anybody else have thoughts on the matter of stating the "parents expressed concern"? Jytdog (talk) 02:14, 31 July 2017 (UTC)

Location of gofundme content; rename "Reactions" section?

This has been in the Reactions section for a long time. It has been moved to the "Background" section and back again a couple of times so seems worth discussing.

In my view the Reactions section is for stuff that happened outside of the medical context and outside the legal context, in the public sphere, and the gofundme belongs in that section. Perhaps that section should be called "Public sphere" or the like. Jytdog (talk) 15:53, 30 July 2017 (UTC)

tried it here. Jytdog (talk) 16:03, 30 July 2017 (UTC)

Can't agree with this here, sorry. The main sections should cover the timeline of the entire case, not just litigation or medical background, etc - there's more to this story than just those. (Note I also renamed "Medical background" to "Background" a while ago, because why constrict ourselves?) The fact that the parents ran a very successful public crowdfunding campaign is part of the story and belongs there chronologically. Renaming the "Reactions" section to a kind of all-purpose "public stuff" section confuses matters more than it clarifies, IMO - and the crowdfunding still wouldn't belong there because the amount of money it raised for the parents' case is just as important as the fact that the public were involved. Popcornduff (talk) 02:01, 31 July 2017 (UTC)

Not sure what you mean about the money being raised for the 'case" - it was raised specifically to bring the boy to another facility, per the content and its sources. it was never used and it seems to be it just represents public interest in the matter. But I do hear the point about chronology. I hear that. Jytdog (talk) 02:11, 31 July 2017 (UTC)

I agree with Popcornduff. The article needs a more chronological ordering. A lot is missing or is confusing because out of place. This was an important medical-ethics case for lots of reasons, and some of the aspects being removed or minimized were key parts. SarahSV ^(talk) 02:24, 31 July 2017 (UTC)

And you continue with the campaigning and framing. It would be helpful if you laid out these Big Problems you see with the article instead of repeating vague claims. That way we could work on them. Would you please explain why you say this was "an important medical-ethics case? It was surely important for the parents, but medically everything unfolded normally and likewise the court cases - no appeals or subsequent judgements changed the first judgement. I haven't read anything discussing how this will lead to changes in law or medicine. There was a lot of noise in the media and social media, but that is not "important" as far as I can see. (But the media noise is all the more reason to keep the article focused on the core issues and not get distracted) But please do tell. Jytdog (talk) 02:32, 31 July 2017 (UTC)

Comment

This is a vey important case. I would respectfully suggest that whilst it is clearly important from a medical viewpoint it is at least as important from jurisprudence and medical ethics points of view. It has raised a great del of controversy here in the UK and in the USA. Much of that is based on quite considerable ignorance on both sides of the pond. Although sources quoted in the article include the court material, nearly all quoted refer to newspaper articles and these show little understanding of the legal/social medico/ethical differences at the root of the controversy. The encyclopaedic role of Wiki is needed here.

I am very happy to suggest text to remedy that but am highly nervous of the important and necessary disciplines in editing a W page (Jacksoncowes (talk) 18:20, 26 July 2017 (UTC))

You left the following message at User talk:92.28.31.47 in this diff, for some reason

could the page show

1) the Hospital applied to the High court after the parents declined to give consent to the plan proposed by the doctors.

2) the hospital used the Court's inherent jurisdiction (parens patria), a principle that exists in UK and USA law.

3) The American Dr was invited by the Hospital to examine the child in January but had not seen the child, had not read the medical records by the time of the April Hearing when he gave evidence advocating that he treat the child.

4) that the American Dr had not seen the child, read the medical records or the earlier judgements when he later claimed to be able to provide new evidence supporting his proposed treatment. He was then asked by the judge to examine the child. After that examination he gave evidence not recommending he treat the child.

5) In the UK the child welfare/ best interests are paramount.

6) In the UK the parents rights are regarded as responsibilities to act for the best interests of the child.

All these points are supported by the references given Jacksoncowes (talk) 15:36, 26 July 2017 (UTC)

--Jytdog (talk) 20:54, 26 July 2017 (UTC)

So you seem to be wanting to build an argument, and we don't do that in Wikipedia. But to respond point by point

1. this in the article already
2. unclear what the point is here - courts are where people go to work out disputes.
3. i noticed this as well (it is in one of the GOSH statements), and have thought about adding this but i have not seen this discussed by secondary sources, and in general we hesitate to pull stuff out of primary sources ourselves.
4. this appears to be a misunderstanding on your part? the "new evidence" about which GOSH filed for a new hearing, came in a letter from the Italian hospital, not from Hirano. The rest of this is in the article already
5. where are they not? again, writing this makes it appear you are building an argument
6. as above

Please do keep in mind WP:Beware of the tigers. I imagine that thoughtful analyses of the medicolegalethical issues here will be written up in a few months and we can certainly summarize those, but we don't actually build such content ourselves. Jytdog (talk) 21:05, 26 July 2017 (UTC)

Thank for your response and help. I hope I can demonstrate that I am not trying to build an argument. Of course we don't do that in Wikipedia and neither should we. If ever there was a case not to be used in an argument this is it. I am no tiger.

1 you are right
2. You say "courts are where people go to work out disputes". Well, only sometimes. In the majority of cases, both in the Uk and the US, when the physician forms the view that continuing treatment would be unethical the matter is resolved by agreement between the physicians and the surrogates. When surrogates disagree with the physicians in the US the physicians tend to accede to the wishes of the surrogate.

and when, in the US, the matter goes to a court ".......... courts have almost uniformly ordered continued treatment when asked to resolve disputes between families who favor treatment and physicians who oppose it"
But this is much more so in the UK than in the US. Whilst the principle of parens patria exists in the US it is rarely used in this type of case (or at all?). See


To the extent that the courts are used in the US the tendency is to use statute. "There are statutes of this sort in the majority of states in the US (eg the Unilateral Health Care Decisions Act),[48] however, they appear to be ineffective."
These remarks are an attempt to show that there are legal, cultural and social.......unfinished.

You are making general points about how decisions in futility cases are made. Adding this kind of stuff to this article would be what we call WP:SYN. What we need, are published sources discussing those issues with regard to this case. Jytdog (talk) 15:46, 27 July 2017 (UTC)

I did not realise this was going online until I read your interjection just now. I was nowhere near ready for my contribution to be published. Of course that is my fault and I apologise for wasting your time - I am insufficiently skilled in the arts of Wikipedia to continue. I will retire and leave it for the page to develop as it may. My intention was to try to introduce factual information to promote a better understanding of the way the case proceeded.

Allow me to say in respect to your response to point 3 that you should look for that as there is a mass of it out there. In respect of your response to point 4 you are wrong and you will find it easy to research that. For 5 & 6 the list would be very long.

Jacksoncowes (talk) 16:20, 27 July 2017 (UTC)

This artcle discusses the difference mentioned above between UK and US approaches. Bondegezou (talk) 15:10, 29 July 2017 (UTC)

found a different BBC source that lays the legal context out and have added content about that to the background section, in these diffs - have incorporated the BBC ref you suggested in the proposed content about politics in the section below... Jytdog (talk) 22:27, 29 July 2017 (UTC)

I respect the efforts you have been making to keep this article on track. I do think your alteration to my edit makes much better reading. The article mentioned above (BBC Charlie Gard: A case that changed everything?) sets out some of the issues that I think the article needs. I am pleased that some of those points are now gradually getting in. Another article, Observer 30/7/17, "English courts facing new cases of medical rows over children" gives indication of the interplay between the legal process of the case and the simultaneous public comment on social and other media. "Last year approx 18 such cases were considered" "Das (Dr) said the reverberations from Charlie's case would be felt for many year"

Jacksoncowes (talk) 19:42, 31 July 2017 (UTC)

Sections

The section headings in this article have been discussed, changed, changed again and are not now satisfactory. I also agree that they have been used in a way that has prevented the article developing.

This article has correctly been classified on Wikipedia as of low importance in the medical and law wiki projects. Indeed from those aspects there is very little about the case that is notable.

The most notable aspect of the case, and it is very notable, is the reaction on social media by colossal numbers of people who had little knowledge of the medical facts of the case and little or no understanding of the legal framework dealing with it. This included the President, the Leader of the house and some 47 - 50+ congressmen who signed a letter to the effect that the hospital was holding the child hostage. The use of social media is a unique feature of the case. To the best of my knowledge this is the first case of this type in which a highly respected medical journalist was in court constantly tweeting a contemporaneous record of counsel's addresses and Judges comments. The parent asked that reporting restrictions be lifted - rare if not unique for this type of case.
The ramifications of this case, and the full development of medico/ethics have yet emerge, but they are beginning and are out there. If this article is to develop as I believe it should there needs to to be an acceptance that there is a sociology/political dimension to the case.
The section headed Reactions is problematic. It seems to have become a sort repository for contribution that some feel shouldn't be in the article.
I am not trying to develop an argument. It is as plain as a pike staff to me that this article needs to develop an account of the socio/legal/cultural forces, in the UK and in the US, that were at work whilst the case progressed through the courts.
I am seriously grateful to Jytdog for the word druthers. Well I'll go to the bottom or our stairs!

Jacksoncowes (talk) 20:50, 31 July 2017 (UTC)

That section is there, and i added a significant chunk of content to it. I understand your perspective here, but something to be aware of, is that the more "meta" commentary that comes in about the clashes, the more this article itself is likely to become the same battleground. I've been grateful (fingers crossed) that the "forces" you mentioned have not brought their campaign here ; please be aware that there is nothing from stopping one or more editors from starting to try to add talking head commentary from that perspective and giving it a great deal of WEIGHT, and to the extent that it is well sourced, it becomes very difficult to maintain NPOV.

I have been wanting to keep the talking-head stuff as minimal as possible in the article overall to avoid all of that from overwhelming the description of the medical background and the court case - the actual facts of the matter. That is where we serve the public and our mission by providing "accepted knowledge".

WP is not part of the blogosphere and especially on "hot" topics like this, people want to pull WP into the blogosphere, and we end up a) with an ugly mess of an article and b) protracted disputes that end up at arbcom. We avoid all the mess by keeping the meta-commentary at a minimum and not rehearsing it all here. Please do keep in mind what is likely to be important five years from now and also WP:Beware of tigers. Please. Jytdog (talk) 21:10, 31 July 2017 (UTC)

You don't appear to have read what I said. Remarkable! I am talking about accepted knowledge not talking heads. Try reading it more slowly, leave out your tiger guff and other jargon (like "this sort of thing", below) and answer my discussion. There is no evidence for thaose slurs. Or not as you wish. Jacksoncowes (talk) 21:48, 31 July 2017 (UTC)

I did read what you read. I was responding directly to It is as plain as a pike staff to me that this article needs to develop an account of the socio/legal/cultural forces, in the UK and in the US, that were at work whilst the case progressed through the courts. Jytdog (talk) 22:28, 31 July 2017 (UTC)

There is actually a discussion happening (initiated by someone else) at WP:NOT about just this sort of thing, and I just offered this article there as an example. See Wikipedia_talk:What_Wikipedia_is_not#Proposal_for_new_section_under_.22Not_a_Newspaper:_Not_real-time_news_reaction.2C_commentary.2C_and_analysis -- Jytdog (talk) 21:27, 31 July 2017 (UTC)

• Jacksoncowes, I agree. The problem is that the article has been cut down in a way that suggests little familiarity with how significant this was in the UK or with the British healthcare or legal systems. By "significant", I'm not referring to the amount of coverage, but to the unique or rare issues involved. Perhaps a request should go out somewhere for more editors, particularly those familiar with the UK. SarahSV ^(talk) 21:47, 31 July 2017 (UTC)

Thank you. You hit the nail on the headJacksoncowes (talk) 21:52, 31 July 2017 (UTC)

SlimVirgin you continue to make these broad claims about Terribly Wrong Things (this is the third time now, and now questioning the competence of all the editors who have worked on this article!) but although I asked you to identify errors, you haven't done so. I do understand the framing technique you are doing here; it is very easy to document. It would be great if you would identify the issues you see rather than continuing to generate drama. Jytdog (talk) 22:30, 31 July 2017 (UTC)

And User:SlimVirgin I really mean that. If you want to restructure and refocus the article, would you please make a proposal to do so? It might be completely reasonable and be able to gain consensus of everybody here (not just me). And it would be a way more productive, not to mention normal, way forward. Same thing to you Jacksoncowes. Please just propose, concretely, a structure so we can discuss it. Jytdog (talk) 22:43, 31 July 2017 (UTC)

What about common sense?

I think the Charlie Gard case is an extreme example of the triumph of bureaucracy over common sense. GOSH's argument for withdrawing life support was that Charlie might be suffering pain. The resulting court cases then ensured that he (possibly) went on suffering pain for months while the lawyers argued. It would have been much better for Charlie if he had been allowed to go to the USA immediately. Not all ethicists agree with GOSH's decision. See, for example, Prof Julian Savulescu here.[15] I would like to put something about common sense in the article but I am offering it for discussion here first. Roberttherambler (talk) 23:49, 31 July 2017 (UTC)

His argument isn't about common sense. Have you read Julian Savulescu? This is not a person who is in the mainstream of biomedical ethics. As I have made clear here I don't favor more talking head commentary. Jytdog (talk) 00:02, 1 August 2017 (UTC)

How is Julian Savulescu not in the mainstream of biomedical ethics? SarahSV ^(talk) 00:15, 1 August 2017 (UTC)

Cloning humans in order to harvest their parts for the "original" is not mainstream. Optimizing fetuses via preimplantation genetic diagnosis is not mainstream. Savulescu has a utilitarian ethics that isn't mainstream. His quote makes sense given his context, sure. Not to mention hindsight. Jytdog (talk) 00:25, 1 August 2017 (UTC)

Political impact in the U.S.

I saw this article referenced on a talk page I watch, and coming here I'm puzzled. This case was big news in the U.S., but that is not mentioned at all in the lead, and is primarily dealt with through Melanie Phillips in the body of the text. This strikes me as being odd as well as being not neutral, in that important aspects are given insufficient weight. The is far more of a trans-Atlantic political controversy than the dry British court case portrayed here.Coretheapple (talk) 00:00, 1 August 2017 (UTC)

It depends on what you define as "important" and how you define the mission of WP. Jytdog (talk) 00:04, 1 August 2017 (UTC)

It had saturation coverage in the UK, including from the broadsheets; millions of Google hits; serious coverage in other countries, but you tried to have the article deleted, and since then have done nothing but decimate it. This is puzzling behaviour. In another section, you're arguing that there are no medical-ethics issues, but several academics who specialize in medical ethics have explained what they are. SarahSV ^(talk) 00:11, 1 August 2017 (UTC)

I'd suggest building up substantially the context in which this subject became consequential on both sides of the Atlantic. Otherwise this article will be of limited utility. Coretheapple (talk) 00:17, 1 August 2017 (UTC)

SV, the framing continues. The article is quite long, and I and others expanded it. I never said that are no medical ethical issues; of course there are. Above you wrote: This was an important medical-ethics case for lots of reasons, and some of the aspects being removed or minimized were key parts. and I replied: Would you please explain why you say this was "an important medical-ethics case? It was surely important for the parents, but medically everything unfolded normally and likewise the court cases - no appeals or subsequent judgements changed the first judgement. I haven't read anything discussing how this will lead to changes in law or medicine. There was a lot of noise in the media and social media, but that is not "important" as far as I can see. (it is a reason to keep the article focused on the issues) But please do tell. Instead of answering there, you just continue repeating misrepresentations, not answering questions, and not proposing concrete changes. Your behavior is WP:DISRUPTIVE. Please stop. Jytdog (talk) 00:20, 1 August 2017 (UTC)

(ec) I was about to mention that the Scopes Trial was more than a Tennessee circuit court proceeding; it was an international event. So is this. As for length, are we trying to save newsprint? Coretheapple (talk) 00:23, 1 August 2017 (UTC)

Nope as I said is has to do with NOT. Jytdog (talk) 00:26, 1 August 2017 (UTC)

How so? P.S. This kind of user talk page post is not constructive. Please don't post to my talk page. Coretheapple (talk) 00:32, 1 August 2017 (UTC)

The Scopes article is actually a pretty good comparison. Most of the article covers what actually happened. Most of the "aftermath" stuff, was longer term effects (which we can see, because it happened a long time ago) There is a section on the immediate coverage, but that part is much shorter than the part covering the actual trial.

We are not far away in time from this event, to understand the "aftermath" or whether this will be "important". There is a lot of hot air blowing around but it is too soon to sort out Importance of all that. We don't participate in that hot air -- this is discussed at the discussion at NOT that I linked to elsewhere here. Jytdog (talk) 00:34, 1 August 2017 (UTC)

What you call "hot air" is coverage in reliable sources. And no, we are not going to bequeath this article to our grandchildren. This is not a historical textbook. It is an online encyclopedia. We have sufficient sourcing to construct an article, and as for structure, below, that is secondary to including all relevant information. Coretheapple (talk) 00:39, 1 August 2017 (UTC)

The discussion is not about whether the article should exist but about its scope, and what we do here. WP:NOTNEWS is policy, as is WP:UNDUE, and WP:RECENTISM is an important essay. You are simply saying "sources exist and we should use them" but I don't have a sense from you either about for what or how. We could have many bytes here just quoting tweets for example.

I have teed up a section below so we can discuss the scope and structure. This may end up at an RfC but we need to have actually discussed things and so far nothing concrete has been proposed so hasn't even been discussable. Jytdog (talk) 00:50, 1 August 2017 (UTC)

Please don't misrepresent what I say. I didn't say "sources exist and we should use them." That would be moronic. I was addressing your using "hot air" to dismiss the news coverage that this subject has received. The "recentism" essay, if applied rigidly, would eviscerate all articles on recent subjects. Please don't misuse it. Coretheapple (talk) 00:58, 1 August 2017 (UTC)

Where do you draw the line for what is appropriate, and what is NOTNEWS, for this article? Jytdog (talk) 01:17, 1 August 2017 (UTC)

That's impossible to answer in the abstract. So, for the third time, can you please give an example of the "hot air" or material that you think is covered by NOTNEWS? Because I don't see you specifically addressing it above. Coretheapple (talk) 01:30, 1 August 2017 (UTC)

It actually is possible. see below. ... 01:32, 1 August 2017 (UTC)

Well I can see that this discussion isn't especially productive. You can't produce a single example of inappropriate material covered by NOTNEWS or constituting "hot air" (whatever that means), nor can I find any in the discussion above. Perhaps I've missed something, but that's my conclusion from the discussion above. Coretheapple (talk) 01:35, 1 August 2017 (UTC)

Overly hasty. that. As I said, see below. Jytdog (talk) 01:58, 1 August 2017 (UTC)

Nope. Not a single puff of hot air, not a single whiff of "news" masquerading as encyclopedic content. Coretheapple (talk) 02:12, 1 August 2017 (UTC)

Inadvertent reverting

InedibleHulk, I think you're inadvertently reverting the detail I'm adding as you change baby to Gard. See the latest diffs. I'm about to revert if it's too fiddly to restore otherwise. SarahSV ^(talk) 04:58, 1 August 2017 (UTC)

Sorry about that. I'd have reverted it myself, if you hadn't intentionally changed him back to a baby infant child on top of the detail. That made it a bit hard to want to help. InedibleHulk (talk) 05:21, 1 August 2017 (UTC)

Proposals for structure

How would folks like to see this structured? What should the sections be, and how, roughly, should WEIGHT be distributed among them? There are clearly different perspectives, so let's talk this out. Jytdog (talk) 00:21, 1 August 2017 (UTC)

Structure emerges from an article as it is built up by various editors and is not determined in advance. I'd suggest that editors, instead, add to the article with material that belongs in it, and structure can evolve organically. Coretheapple (talk) 00:46, 1 August 2017 (UTC)

This article is actually pretty mature and there is a dispute about scope and apparently about structure. Jytdog (talk) 00:50, 1 August 2017 (UTC)

Strongly agree about structure emerging. It may look messy for a while, but a structure will appear if people are allowed to develop it. As it stands, a lot is missing and the chronology is confusing. SarahSV ^(talk) 00:52, 1 August 2017 (UTC)

Rather than waste our time with structure, why not add things that cry out for elaboration. For instance, doing more than mentioning that the Pope opined on the case. Maybe saying what the man suggested. That's not "hot air" by the way. What's the "hot air" that people want to add, Jyrdog? Please be specific, and include diffs. Coretheapple (talk) 01:07, 1 August 2017 (UTC)

What exactly is confusing in the chonology? It runs straight from past to present as you read down with respect to the core medical and legal events, then steps out to deal with all the media noise. In my view this structure is essential so that people can clearly understand what actually happened. The only place in that part, where it has to reach back in time is that Hirano's identity was only revealed later. Please explain where you find it confusing. If you want to mix the commentary into the flat description of events, that is a significant dispute. Jytdog (talk) 01:08, 1 August 2017 (UTC)

Core you just got here and if you review just this talk page, it is clear. Jytdog (talk) 01:11, 1 August 2017 (UTC)

I did already. I went through all 83 comments made by you on this page and cannot find a single example of "hot air" cited with any specificity. How about just three examples of hot air? I assume you can manage that. Coretheapple (talk) 01:21, 1 August 2017 (UTC)

I will not respond to further comments that contain commentary like "I assume you can manage that" Jytdog (talk) 01:22, 1 August 2017 (UTC)

Oh, so sorry. Struck out. So how about some examples of hot air, defined as material from reliable sources that you don't think should be in this article? ? Coretheapple (talk) 01:28, 1 August 2017 (UTC)

See this diff for a bunch of hot air including tweets.

Above was a proposal to add the perspective of an ethicist, who while he is at Oxford, is waay out of the bioethical mainstream.

There have been efforts to add loads of SYN and opinion about the validity of the nucleoside therapy (see the article when it was in this state - this was what actually brought me here.

There are three. In my view, we should not be citing any primary sources (like tweets). This close to the events, the "reactions" section should characterize - not rehearse - the social media and media storm that happened, using the highest quality refs we can find, and being careful to "write for the opponent" (this is why I used and cited Melanie Phillips). And the reactions section should be kept strictly separate from the narration of events - the high quality commentary says over and over that many people misunderstood the medical issues and the legal context of "parental responsibility" in the UK, and the discussion of those things should be clean, sharp, and easy to read through. The reactions section should have much less WEIGHT than the narration of the events, especially this close in time to the events. The latter alone will help us avoid the blogosphere extending into Wikipedia - keeping the WEIGHT limited also drives up the value of real estate and leads to higher quality sourcing and higher quality encyclopedic summary of what happened. Much later, it may emerge that this dispute actually was of historic importance in some way. We just can't know that now. Jytdog (talk) 01:47, 1 August 2017 (UTC)

GOSH and others have said that medical ethics and the medical profession needs to catch up with what happens in social media (the article says this); how they do that (if they do) as a result would be part of an aftermath section that will grow organically in a healthy way . The law in the UK might change because of this (am totally guessing there). Describing that would be organic healthy growth. The parents are apparently going to set up a foundation with the money they raised. That will be organic healthygrowth for the article. But "organically growing" a rehearsal of the media storm. is not what we should do - in my view that is cancer, not healthy growth. Jytdog (talk) 01:53, 1 August 2017 (UTC) (modify rhetoric Jytdog (talk) 14:16, 1 August 2017 (UTC))

(ec) That diff does present a sourcing (V) issue, as some of it is sourced to a blog. I'd have to examine the blog, but most are not considered usable. Tweets are not directly linked, but a blog is just as bad if not worse. However, I do not view the content as otherwise "hot air," whatever that means. It is highly relevant to the subject matter, and not "news." I find it hard to believe that superior sourcing for that text cannot be found. Apart from that than that I disagree with your opinion on how reaction should be dealt with. If there's SYN, it shouldn't be there. But I'm not seeing any. As for "media storm." Yup there has been one. We don't have to like it. The Pope and Trump have both commented. We don't yell "media storm" and give it short shrift because we can't stand such things. Coretheapple (talk) 02:00, 1 August 2017 (UTC)

media storm is a thing; i didn't invent the term. as i said at the start of this section, there is apparently a dispute here. We resolve those through discussion and RfCs. To resolve it we need proposals. I have made mine. There have been no actual counter proposals other than "add sourced content" which is not really a proposal. Jytdog (talk) 02:05, 1 August 2017 (UTC)

No, it's not a "proposal." It is something editors need to do, in my opinion. You don't have veto power over what people add to the article. If you don't like what people add, you can object here, or you can edit war and be blocked. Nor is there any need to "clear" on the talk page what editors feel needs to be added. There is no need for editors to make "proposals" for what they feel need to be in the article. Coretheapple (talk) 02:15, 1 August 2017 (UTC)

It is not about "clearing" anything, it is resolving a dispute about scope. Jytdog (talk) 02:25, 1 August 2017 (UTC)

Perhaps I've missed all the support you're getting here, but I'm not seeing any. What have I missed? As far as I can see, it is one editor (you) editing against consensus. Am I mistaken? Coretheapple (talk) 02:31, 1 August 2017 (UTC)

Nobody else apparently wants to join into this unnecessarily personalized discussion. But if you review the editing history you will see that others have trimmed hot air and other UNDUE stuff. Jytdog (talk) 02:32, 1 August 2017 (UTC)

Yes, an utter waste of time. Coretheapple (talk) 03:21, 1 August 2017 (UTC)

@Jytdog: Stop posting pretentious do-it-my-way pronouncements here and on user talk pages. You are fighting this as if everyone else was a paid shill for Big Tobacco. Wikipedia does not get everything right, and particularly does not get everything right, right now. Get some support or find another topic. Johnuniq (talk) 03:37, 1 August 2017 (UTC)

Jytdog, there is absolutely no valid reason to remove a quote from the Pope for Pete's sake, with the edit summary "no quotes please." Is that "hot air"? Or you just don;t think the Pope is significant enough to quote in this article? Coretheapple (talk) 03:46, 1 August 2017 (UTC)

I'm also confused about the objection to quotes. Popcornduff (talk) 03:57, 1 August 2017 (UTC)

Because this is not a newspaper. Because a lot of people have said a lot of things and there is no end to it. The Pope is not even a central player here. I was just having a debate about posting here as to whether we should provide a quote of from the April decision of what Hirano actually said, namely "It is very difficult for me never having seen him, being across the Atlantic and seeing bits of information. I appreciate how unwell he is. His EEG is very severe. I think he is in the terminal stage of his illness. I can appreciate your position. I would just like to offer what we can. It is unlikely to work, but the alternative is that he will pass away." That is pretty important and condensed and very close to the heart of the matter and the parent's hopes - and makes it clear that Hirano wasn't offering false hope, at all, and that he qualified his testimony a lot. But I hesitated to even post that here, as somebody would say "well then we should quote the pope!" we should quote Trump's tweets! we should quote Pence's tweet! and all kinds of peripheral talking head crap. I am not concerned about anything like Big Tobacco. I am concerned about unrestrained dragging in of the blogosphere and all of the advocacy out there, in here. So I am not arguing to include that quote.

The editing tonight was actually great and drama free for the most part. The article is better now in many ways. There is still conflict about what to call the baby.... Jytdog (talk) 05:09, 1 August 2017 (UTC)

The quote added to the lead in this diff, and later expanded a bit, about how the case "became the embodiment of a passionate debate over his right to live or die, his parents' right to choose for their child and whether his doctors had an obligation to intervene in his care." is something else. I left because it is from a secondary source and provides a very good, condensed summary that is hard to say better. That was great, and completely different from the pope quote. Jytdog (talk) 05:19, 1 August 2017 (UTC)

Oh gosh, somebody wanted to actually publish a quote from that loudmouth, always seeking attention, everything-for-a-headline tabloid-hogger Pope Francis! That's terrible. As for Trump, yes he actually does fit the aforementioned description. But he is president, and it is notable. Ditto the veep. Yeah, we're not a newspaper. Right, and inapplicable. We're also not deaf, dumb and blind. Coretheapple (talk) 05:24, 1 August 2017 (UTC)

It says nothing about the character of the pope or anybody else. is about bringing the argument into WP, instead of describing the argument. Jytdog (talk) 05:28, 1 August 2017 (UTC)

No, it just omits useful information from the article. That's all it does. We're not saving ink here. We're not trying to scrimp on newsprint. There is absolutely no valid reason whatsoever to omit quotes apart from your personal distaste for details, not to mention your distaste for this entire article. Coretheapple (talk) 05:32, 1 August 2017 (UTC)

We have a dispute. How shall we resolve it? (Again, please stop with the personal commentary.) Jytdog (talk) 05:33, 1 August 2017 (UTC)

I'm going to resolve my end of the "dispute" by breaking off from this utter waste of time. Coretheapple (talk) 05:38, 1 August 2017 (UTC)

Jytdog, you must stop removing text and sources! I added the GoFundMe page for the date and the amount, and because readers might be interested. If you object, say so here, but don't keep removing things. SarahSV ^(talk) 05:37, 1 August 2017 (UTC)

What is the rationale for including the gofundme site as a primary source? It doesn't support any content, and we already have the link to the Gard and Yates personal website in the ELs. And please stop it with the personalization - not every edit that you make or that i make is perfection. Jytdog (talk) 05:46, 1 August 2017 (UTC)

Your 2nd edit at this article removed placeholder content I had put in the lead, summarizing the media frenzy. I didn't have a cow that you were wildly reverting everything. Core has now put something back in the lead to fill that gap in the lead, which was indeed lacking per WP:LEAD. Things evolve and there doesn't have to be personalized drama over it. Jytdog (talk) 05:52, 1 August 2017 (UTC)

Linking directly to any page with a persuasive story and a Donate button flies against WP:NOTADVOCATE. And WP:SPS, less importantly. InedibleHulk (talk) 05:56, 1 August 2017 (UTC)

No one else will send money now, and the source supports the date and amount. Find alternative sources if you want to remove that one. But, really, objecting to it seems pointless. And it's not an SPS; it's a primary source. SarahSV ^(talk) 05:59, 1 August 2017 (UTC)

In a perfect world, people would stop sending money to save a dying baby after the baby dies, but this is the real world, and the latest was five pounds, seven hours ago. It's published by his mother, that's close enough to "self", as dying babies can't type. The alternative source is the Metro story, and it's already there. InedibleHulk (talk) 06:10, 1 August 2017 (UTC)

I've just re-read the article and I think it looks OK. Can't we just leave it to develop organically from now on? I think there will be more to say on parents' rights but perhaps that is for a separate article. Roberttherambler (talk) 09:40, 1 August 2017 (UTC)

There is an article Parents' rights movement. Roberttherambler (talk) 10:06, 1 August 2017 (UTC)

gah, more "organic growth" - this is part of the rhetorical framework. WP articles are agriculture - the product of people and their negotiations - not like things that spring up in nature. like all of wikipedia, everyone can edit. like every article where there are clear disagreements, people should be ready to discuss per BRD. Jytdog (talk) 14:16, 1 August 2017 (UTC)

There isn't anything I want to change at present. I'm not going to do BRD just for its own sake. Roberttherambler (talk) 15:24, 1 August 2017 (UTC)

Roberttherambler, I added that article to "see also." Is more context needed on that issue? Coretheapple (talk) 16:17, 1 August 2017 (UTC)

Thank you. I have added more context to Parents' rights movement Please feel free to add more if appropriate. Roberttherambler (talk) 16:57, 1 August 2017 (UTC)

I have just finished reading the debate above. I sincerely hope it does not offend anyone or any WP if I say that I thought it was a first class debate on both sides. To me is was, very helpful in sorting out my thinking. I totally go with the view that we do not want talking heads. In any event there is little divide between eminent ethicists on either side of the pond; the ethics here are straightforward. Of course there is some divide but, in short, I completely agree there is no place for it here.
The debate above about hot air and tweets was great. Of course, at a straightforward level, no hot air and no tweets. But it is not that simple. I think Coretheapple when s/he tackles this with the characterisation of the Pope and then Trump is excellent. Of course we don't want hot air, of course tweets are out. Were it so simple. Any old persons tweet/s mean nothing. Vast numbers of any old people, tweeting the same thing is, to my mind, a different matter. To rule out any mention of the meaning of that cannot be right. When WP considered tweets the Pope, Presidents, word leaders etc didn't tweet. When later they did they didn't enter into delicate sensitive affairs within their own countries, let alone other's, with provocative ill-informed interventions. If say, the President of France tweeted today that he will bomb say Oslo next week, is that hot air? Should Wiki, one month later say 'can't have that, its a tweet? The article on the French bombing of Oslo will have a problem. Either those editors need to find a way or Wiki need to look to its laurels. Let me respectfully leave Trump aside for a moment as a special case. These tweets were from the Speaker, from several Congressmen etc etc and they had a very real influence on the case as it progressed; they were not simply a reaction to the case, they played a part in its progress. To call this hot air and reactions does not, to my mind, cut the mustard.

--Jacksoncowes (talk) 20:08, 1 August 2017 (UTC)

Legal aid

The legal aid issue should be explained. It's not that they simply didn't apply. They weren't eligible, even though parents with similar finances are eligible in care cases where the state is seeking an order against them, which is effectively what happened here. The judge commented on it. It's explained here.

I would normally create a section on this, but the serial reverting is such that spending time on this feels as though it would be time wasted, so I'm leaving this note instead. SarahSV ^(talk) 01:11, 31 July 2017 (UTC)

Thanks for opening a discussion.

It appears complicated. In the Guardian source that is cited, we have

A spokeswoman for the Legal Aid Agency said: “Legal aid is rightly available for high court cases in relation to children and vulnerable adults. However, there was no application for legal aid in this case.”

and the pro bono attorney says: “You don’t automatically get legal aid in any situation other than where there are care proceedings … You don’t get legal aid in life-and-death cases like this.”

and the article goes on to say: "The exceptional case funding scheme, which was supposed to provide a safety net for urgent cases of public importance, was so strictly interpreted initially that it failed to function, convincing many lawyers that spending many hours applying to Legal Aid Agency was wasted time. "

The ref cited above talks about means testing but doesn't say how that applied to Gards and Yates. It also quotes the judge asking why they didn't get it. It doesn't actually say why they didn't get it.

It ~appears~ that the issue is that legal aid funding was a) not automatic and easy to obtain; and b) the parents may have not been able to pass the means testing (?): c) maybe (?) the lawyers determined it was not a good use of their time to apply for the exception;

So yes the current content is not the whole story, but it is also apparently not incorrect.

My druthers would be to not discuss this at all, since this is not essential to the story and the reality is not clear from the refs at hand. Especially because, as the judge noted, they were able to obtain excellent representation. (If they had bad representation, it would be worth discussing, in my view)

In my view the actual issues here are hard enough for people to understand (as much of the commentary about the commentary has noted).

recapping the editing around this -

Content about legal aid was introduced in this diff 22:25, 29 July 2017 and it said "denied legal aid. (it was added in front of this ref which doesn't mention legal aid.

that was changed in this diff (now with the Guardian ref added) to "did not apply for legal aid" at 17:16, 30 July 2017

which is where it has stayed until now.

So I would say take it out because a) it is peripheral since they had excellent representation; b) it is complicated; c) the sources are not clear about why they didn't apply.

I also don't think it is reasonable to say that what happened here, was the "state is seeking an order against them." This was a disagreement over the best interests of the child that was in the hospital, not something like removing a child from their house. But it was very serious for sure. Jytdog (talk) 01:57, 31 July 2017 (UTC)

Judge: "To most like-minded people, a National Health Service trust is as much an arm of the state as is a local authority." [16] SarahSV ^(talk) 03:28, 31 July 2017 (UTC)

That is really not about the content; we are not part of the debate about the UK legal system. Jytdog (talk) 04:22, 31 July 2017 (UTC)

I do agree with you when you say "I also don't think it is reasonable to say that what happened here, was the "state is seeking an order against them."
However, I also believe that fuller information about Legal Aid is needed. I am not advocating a discussion about the UK Legal System but more factual information about it as it now exists is needed to put this case into context. One of the most unusual features of the case as it proceeded was the very poor understanding of the Legal framework by the majority of a uniquely large number of people who commented on the case as it progressed. Uniquely these ill-informed comments also came from people of world eminence and power.Jacksoncowes (talk) 18:21, 31 July 2017 (UTC)

This article links to Legal_aid#England_and_Wales and that perhaps needs to be fleshed out. Perhaps it should link instead to Legal Aid Agency which is a stub. That is where info about the legal aid background in the UK should be; we shouldn't rehearse all that here. The article also links to Children Act 1989, Parental responsibility (access and custody), and Best interests. The legal context is right there. Jytdog (talk) 22:37, 31 July 2017 (UTC)

Jacksoncowes, if you want to start a section about the legal aid aspect, please do. It needn't be perfect. Just add what you can and others will expand. Ditto for anything else. SarahSV ^(talk) 02:30, 1 August 2017 (UTC)

Thank you. I actually feel that it is fine as it appears now. Probably, once the pro bono offer had been made, not at all unusual in this type of case, Legal Aid was a dead question. I don't know all that so the way it is now put in the article seems good to me. Note that a separate, second pro bono team presented the case either at the Court of Appeal or at the Supreme Court or both - I forget the exact detail. Note also that whist they were refused leave to appeal on some points they were allowed (to appeal) on 2? others. That may latter become important, but not now and not for this case or article. Jacksoncowes (talk) 20:27, 1 August 2017 (UTC)

Infobox (hatted)

Sorry, Didn't notice that there was already an infobox discussion a few days ago, still on this page. Dynagirl can you kindly make your suggestion above? Thanks. Coretheapple (talk) 15:43, 2 August 2017 (UTC)
The following discussion has been closed. Please do not modify it.
Not trying to spark a big drama here (I know infoboxes can be terribly controversial!) but I was wondering if we really need an infobox. It adds nothing even for phone users. Don't feel strongly about it one way or another, but I lean toward removing. Coretheapple (talk) 15:10, 2 August 2017 (UTC) Is there a fair use photo of Charlie Gard? I notice the Terri Schiavo case includes an image of Schiavo. It seems if it included an image, the inbox would be more useful. --DynaGirl (talk) 15:20, 2 August 2017 (UTC) Oh that's a good idea. That would make it a viable layout element. Coretheapple (talk) 15:39, 2 August 2017 (UTC) Oh crikey. I just noticed that there is already an infobox discussion. Sorry, I just didn't see it. I'm going to hat this discussion. Coretheapple (talk) 15:43, 2 August 2017 (UTC)

another quote

This was added at some point to the part about the when the dispute first arose: I don't know by whom:

An email from one GOSH doctor to another said: "parents are spanner in the works. Recent deterioration with worsening seizures means trial is not in his best interests." This apparently caused distress when the parents obtained the hospital records. The doctor expressed regret for the wording; he apparently intended only to express that the parents alone still sought the nucleoside treatment.

References

The Justice said of this "In my judgment, Dr. B showed through his evidence that he is a dedicated Consultant Paediatric Intensivist operating with immense skill and compassion at the very highest level of medicine in this country and I reject any criticism that may have been made of him during these proceedings." I don't understand how this helps readers understand what happened here. This is a blip, and there were lots of them. Jytdog (talk) 06:54, 1 August 2017 (UTC)

I added it tonight, and you know that I did. It was obviously a factor in the breakdown of the relationships, and the judge dealt with it at some length. Please stop removing other people's work. SarahSV ^(talk) 07:25, 1 August 2017 (UTC)

No, I didn't go look. There were several of us editing stuff. (and please stop personalizing) The email seems to be an expression of the breakdown, not a factor. And we already know there was a breakdown from many secondary sources. The judge gave it some space because it was unfortunate and emotionally hard. There are longer swaths of the decision that we didn't summarize. And there were lots of awkward, human blips in this whole thing, like the dad interrupting GOSH's lawyer, and saying: “When are you going to start telling the truth? They are lying to you." (ref) This is WP:GOSSIPy, nonessential stuff. Jytdog (talk) 07:41, 1 August 2017 (UTC)

If secondary sources haven't highlighted it, I would err on the side of not including it, as per Jytdog. Bondegezou (talk) 08:00, 1 August 2017 (UTC)

• Frankly I don't understand why we're using the decision as a source, when the "spanner in the works" language was cited by multiple secondary sources, including the New York Times. So yes, secondary sources have highlighted it, both British and American sources. Use Google, people. No, on second thought I do understand. The problem, I think, is that there has been such over-argumentation on abstract and sometimes inane points on this talk page ("are quotes OK?" "what does 'important' mean"? "what are the reasonable boundaries of 'notnews'?'" etc etc) that it has disrupted the editing of this article and prevented the ordinary development and sourcing process. Coretheapple (talk) 14:17, 1 August 2017 (UTC)

This article has been contentious for sure. Completely unsurprising. I have been very concrete about scope, NOTNEWS, and WEIGHT. "It is in reliable sources" does not address issues of DUE/UNDUE (which is policy) nor NOTNEWS (which is policy). People disagree about how to apply policy. So we discuss. Jytdog (talk) 14:25, 1 August 2017 (UTC)

Core shall we include “When are you going to start telling the truth? They are lying to you." which is also in multiple RS? I don't think so and have said why. What do you think? Jytdog (talk) 14:26, 1 August 2017 (UTC)

Well so far in this discussion only one editor, which is you, wants the "spanner in the works" quote excised completely, no matter what. So kindly don't edit-war against the consensus at this time. There is no reason for you to go to war over every quote, every aspect of this article. You seem to treat every new detail added to this article as a personal affront, and that has to stop. Coretheapple (talk) 14:42, 1 August 2017 (UTC)

And I have no opinion on the "telling the truth" quote. Why are you raising issues that are not live at the moment and not in contention. It wastes volunteers limited time and is disruptive. Please stop the endless, ridiculous discussion about nothing. Coretheapple (talk) 14:57, 1 August 2017 (UTC)

You will not restrain yourself from personal attacks. So be it. Jytdog (talk) 15:04, 1 August 2017 (UTC)

It's not a personal attack to point out that you are raising specious points, and that your doing so is disruptive. Here's one way in which it is disruptive: by raising every conceivable objection over every conceivable thing, and citing non-existent strictures ("no quotes please") that you make up out of thin air, you have not only wasted volunteer time from adding sources, but also diverted attention from the tendency of this article to rely on a primary source, the court decision, which is not prohibited but also not optimal. Coretheapple (talk) 15:06, 1 August 2017 (UTC)

I have deleted the reference to the spanner in the works remark. This was used in conjunction to the phrase "at that time". I know of no evidence to indicate that the parents were aware of the remark at that time . It was used in a private doctor to doctor email as a way of saying that the parents were opposing the view of the doctorsto withdraww life support. I think the email became known to the parents during the process of the litigation. The remark was clearly very inappropriate; it was discussed by counsel and judge at the court case and the judge addressed it. I know of nothing to indicate the parents were aware of it "at that time" and therefore of it playing a part in the loss of trust by the parents of the medics. Do, of course revert if I am wrong. --Jacksoncowes (talk) 19:44, 2 August 2017 (UTC)

Additional sources

I suggest that additional sources be added in this section, to provide resources for useful details not currently in the article. Here's one:

• https://www.washingtonpost.com/news/worldviews/wp/2017/07/06/american-hospital-offers-to-admit-charlie-gard-british-baby-at-center-of-life-support-controversy/?utm_term=.2cf3a2522e08

--Coretheapple (talk) 18:12, 2 August 2017 (UTC)

• Re: sources, Jackson if you remove material in future, please don't remove sources that are used elsewhere, as in this edit. [17] It meant I couldn't identify the sources in their other two locations and therefore removed them, so now I'll have to go back and restore. SarahSV ^(talk) 20:05, 2 August 2017 (UTC) @Jacksoncowes: SarahSV ^(talk) 20:06, 2 August 2017 (UTC)
  

Ta! Mea culpa mea maxima culpa saw the fault but was anxious not to leave sources hanging. Jacksoncowes (talk) 10:09, 3 August 2017 (UTC)

Another source request: when people cite the judgments, please include a paragraph number using {{rp}}. Otherwise it can be hard to find the supporting text. SarahSV ^(talk) 20:09, 2 August 2017 (UTC)

Who sued whom?

This article says:

The medical team thought it was in his best interests to withdraw life support and proceed with palliative care, but Charlie's parents still wanted to try the treatment.

British courts and the European Court of Human Rights supported GOSH's position

The news coverage never explained why the parents didn't simply tell the hospital they had decided to take their son elsewhere for treatment and then do so. Elsewhere on the internet someone is saying that it's because the hospital had petitioned the court to authorize them, rather than the parents, to make decisions. Was the lawsuit initiated by the hospital rather than by the parents? If so, why doesn't the passage quoted above say so? The lack of any statement about that leaves confusion behind. Michael Hardy (talk) 19:44, 1 August 2017 (UTC)

I hope this is helpful. Yes it was initiated by the hospital. The legal situation in this jurisdiction is clear. Charlie is without capacity; it is his parent’s duty and right to decide about his medical treatment. It is for his parent or parents to give or to withhold consent to the doctors for their treatment of Charlie. Although Charlie is without capacity he is an individual, a person in his own right; he is not his parents’ property, he is not a chattel. The law gives effect to this by allowing the court to take over the decision-making role if it is of the view that the parent/s are not able or do not carry out their duty in Charlie’s best interests. The court can be asked to step into that role by anyone. In theory any Tom, Dick or Harriet could seek to persuade the Court that it should take over the decision-making role from the parent/s. Very considerable hurdles exist to restrict Tom, Dick or Harriet’s applications; i.e. to prevent them from being heard. In practice applications must be from those with a proper standing, a proper role in the child’s welfare. This obviously includes doctors and hospitals treating a child. To be clear, at no point in this process do doctors have the right to overrule the parents or to remove from the parents their right and duty to make those decisions. If the doctors believe that the parents decisions are inimical to the child’s welfare they can, perhaps must apply to the court for the court to take over that role from the parents. That role then passes to the court, not to the doctors.Jacksoncowes (talk) 20:52, 1 August 2017 (UTC)

I've added a bit to article here and another ref. The framework of responsibility, not rights, is the key thing. The hospital couldn't just discharge someone a child in intensive care - they have a responsibility that the next step is in the child's best interest... just like the parents do. The problem was that they disagreed about what was in Gard's best interests.

The hospital asked the court for permission to remove life support, and the parents opposed that motion. (nobody sued anybody)

Please keep in mind that this is not a forum for discussion of the topic. Jytdog (talk) 21:08, 1 August 2017 (UTC)

Why have you said that here? What are you referring to? This talk page is peppered with discussion. It is peppered with requests from you Jytdog for discussion. Are you intending to be intimidatingly cryptic?Jacksoncowes (talk) 12:27, 2 August 2017 (UTC)

I found the article's lead section saying this:

The medical team thought it was in his best interests to withdraw life support and proceed with palliative care, but Charlie's parents still wanted to try the treatment.

British courts and the European Court of Human Rights supported GOSH's position

Since that time, I have altered it to say this:

The medical team thought it was in his best interests to withdraw life support and proceed with palliative care, but the parents still wanted to try the treatment.

In February, the Hospital asked the High Court to override the parents' decision. British courts and the European Court of Human Rights supported GOSH's position, and the parents eventually dropped their challenge and agreed to withdraw life support.

The fact that it was the hospital that sued, rather than the parents, is crucial and its omission will lead to confusion and misunderstanding.

The news reports on this left me under an impression that in England parents are not allowed to tell the hospital they've decided to take their child to a different hospital and then carry out their decision, so they had to ask a court of law to make that decision. I wondered why journalists did not explicitly inform us there is such a law rather than leaving us to deduce that.

But what prevented the parents from carrying out their decision was not any such law; in fact there is none. Rather it was the fact that the court had intervened because the hospital, not the parents, had asked the court to intervene. The lead section of this article would naturally have left the same impression that I got from news reports as long as it omitted that essential information.

The judge was quoted as calling "nonsensical" some statements from Americans that this dispute resulted from the single-payer nature of Britain's health system. But that is the very impression that this article would leave without that information in the lead section. Michael Hardy (talk) 22:46, 1 August 2017 (UTC)<br.>

Michael Hardy (talk I think your questions and comments are germane to an understanding of the differences in the systems in the country and jurisdiction where the child was in hospital and those in the country where another doctor was offering treatment. The concept of "sue" does not apply here. The Applicant (GOSH) was asking the High Court to exercise its powers (parens patriae) to make decisions. The respondents to that application were his parents (1&2) and the child (3) because the judge joined the child to the case.
Why did the parents not just remove the child from the hospital ? Leaving aside for a moment the practical issues of the ventilator etc. That is exactly what the parents did in the Asha King case. Unfortunately, the Wiki article on that case is deficient in setting out that background and it is little help in understanding why what happened happened. I fear to go on. This article needs to get to grips with these complicated facts. Totally relevant and totally factual but very difficult to know how to get it in

In terms of the relevant differences between UK & US here this is a real You like potato and I like potahto dialogue.
--Jacksoncowes (talk) 14:15, 2 August 2017 (UTC)

By omitting a crucial fact from the lead section, the article made it appear that there are far greater differences between the UK and the US than there actually are in situations like this. The omission of that fact made it appear plausible that in England parents do not have authority to move their child from one hospital to another without asking a court to intervene. But that is not actually what happened. Michael Hardy (talk) 18:51, 3 August 2017 (UTC)

It is fine to make the lead more clear. Thanks. Jytdog (talk) 23:08, 1 August 2017 (UTC)

his two parens an

Parents convinced child not suffering

I'm not sure about this. It in the start of the article. I think they acknowledged that he was suffering in their evidence at the first hearing - I may be wrong. As it stands I think it needs a ref? --Jacksoncowes (talk) 19:42, 3 August 2017 (UTC)

content added today in "arguments" section

Content was added about differing approaches to experimental treatment in the US from this BBC ref. The description in that ref is not in line with other refs (too high a level summary so that it mangles things). There is no place in the world where it is medically ethical to give someone an experimental treatment that is more likely to harm them than hurt them (and that includes doing nothing and prolonging their suffering). There is a difference in how the legal systems in the UK and US generally treat disagreements between doctors (who are bound by medical ethics) and families (who aren't) when there is patient who can't choose for themselves (like a minor)... as well as differences in culture. That is explained pretty well in two refs already in the article -- this other BBC ref and this CNN ref. Jytdog (talk) 23:14, 1 August 2017 (UTC)

It was also discussed in a Washington Post article, as I recall, which you removed. I don't much care how it's phrased but the issue needs to be in the article. Coretheapple (talk) 23:17, 1 August 2017 (UTC)

@Jytdog: It is appropriate to discuss in the way I did on talk, by comparing source and article text, when there is a debate about copyvio, see WP:PARAPHRASE, not least so that an admin can easily review. However, you reverted that edit on talk which needs undoing in my view. Candidly, are you trying to prevent discussion and review of other editors? It was not necessarily a copyvio because the point was not central to the source nor a substantial part of it and had been rephrased as you said, and we could include an in-text attribution or rewrite but if the consensus of uninvolved editors is that it is a copyvio then that of course is my mistake. But it appears you disagree with the source. If so, what is the aspect of the source which you disagree with and for transparency, can you provide the source or link that was previously removed that Coretheapple refers to? Whizz40 (talk) 23:37, 1 August 2017 (UTC)

Jytdog has now reverted an edit on talk too. [18] Please explain. SarahSV ^(talk) 23:43, 1 August 2017 (UTC)

Whizz40, I don't want to revert Jytdog in case you don't want your post to reappear. But if you do, please repost it. It's perfectly standard to compare texts to check for close paraphrasing, and there aren't enough words for it to be a concern on a talk page. SarahSV ^(talk) 00:04, 2 August 2017 (UTC)

Thanks SarahSV, I'm happy for it to reappear but I think the priority should be to get the red tag off the article page so I don't want to distract from that. I think an admin can easily review from the link in your comment above so I'll leave it at that for now but happy for someone else to restore my comment if it is helpful. Whizz40 (talk) 00:11, 2 August 2017 (UTC)

The diff is easy to see before it is revdelled. the ref is here (just the refname in the article) The edit took sentences out of the BBC ref, flipped their order, and Rogeted them a bit. It did not quote them. It is mundane, clear COPYVIO/WP:Close paraphrasing. Jytdog (talk) 03:27, 2 August 2017 (UTC)

All it needed was a slight rewrite. It's just a few words. There's no need to revert, tag the article, tag the talk page, and revert a post discussing it on the talk page. Please restore Whizz40's post. SarahSV ^(talk) 03:36, 2 August 2017 (UTC)

You could very easily revdel it and we could all move on, or you could make drama over this. You will do as you will. Jytdog (talk) 04:20, 2 August 2017 (UTC)

We have an opinion from one admin, SarahSV, requesting a second opinion from another admin. Whizz40 (talk) 05:41, 2 August 2017 (UTC)

The purpose of the revdel tag is that admins who work on this stuff will come with time, and review, and revdel or not. There is no need for drama and everybody can just do work. It is not like you are going to jail or anything. This is just just very normal mopwork. Please be aware that everybody here knows this, and they are just stirring up drama and freaking you out instead of just acting normally. There is no need for extra "admin help". Jytdog (talk) 05:46, 2 August 2017 (UTC)

Jytdog, I've never seen anyone request revdelete for something like this, especially on a talk page. Here is the text that Whizz40 posted, presumably so that we could tell him whether it's too close paraphrasing, and which you reverted: [19]

• Wikipedia: "The ethics of experimental treatment was discussed in court including the different approaches in the United Kingdom and the United States. In the UK, experimental treatment cannot be performed unless it may help the patient receiving the treatment. In the United States, it may be considered ethical to give a patient an experimental treatment that cannot help them, if it may help others in the future."
• Source (BBC News) (paragraph breaks omitted): "In court, there was discussion of the differing ethical approaches to experimental treatment between the UK and the USA. In the United States, it may be considered appropriate to give a patient a drug even though it cannot help them, on the grounds that it helps others in the future. In the UK, patients cannot receive drugs that doctors know will not help them personally." [20]

Conclusion: Yes, it's a tad close. Could use a rewrite. SarahSV ^(talk) 05:57, 2 August 2017 (UTC)

The source -- for this content -- happened to poor, and there was COPYVIO close paraphrasing. Nothing in the edit was useful, and the edit was harmful. What you are doing has nothing to do with improving this article. And what is worse in your pursuit of me, you are confusing and scaring Whizz40. Not good. Jytdog (talk) 06:31, 2 August 2017 (UTC)

Yeah, what you are doing, is nothing good. I thought about removing the tags just so we could move on, until the next thing you fix on, but I don't feel good about allowing COPYVIO to stay in WP just because you are turning this talk page into a battleground. So I will let them stay. If an admin finds nothing, that's fine. It will have been reviewed by somebody. Jytdog (talk) 06:41, 2 August 2017 (UTC)

I think Jytdog has two objections. (1) Copyvio. (2) That the statement in the source is inaccurate. Am I right? Roberttherambler (talk) 08:43, 2 August 2017 (UTC)

Suggested rewording: Differences between potential ethical approaches to medical experimentation were discussed in court. It was said that in the United States it may be considered ethically appropriate to give experimental treatment, even if the treatment is not expected to help the patient, on the ground the knowledge may help other patients in the future, while in the United Kingdom the expectation for ethical experimentation is that the treatment personally benefit the patient. Would this work?--DynaGirl (talk) 13:18, 2 August 2017 (UTC)

I think that would be fine, thanks. As close paraphrases go, the one in this article was not especially blatant and clearly not warranting all the drama. With regard to my comment earlier re the Washington Post, it contains the following text in this article, already cited here. I do believe I added text to this effect and it was removed, but there has been so much ridiculous and unnecessary drama in this article (of which this is only the latest and the most absurd) that I am not sure:

"In the United States, patients can be given certain drugs even if it is known that the drugs in question will not improve their condition, insofar as knowledge of their effects may improve the conditions of others in the future. The same it is not the case in the United Kingdom, where, by contrast, doctors cannot administer treatments that they know will not improve the patient’s condition in a specific case."

Coretheapple (talk) 13:35, 2 August 2017 (UTC)

Either of these rewording looks fine to me. Alex Shih^Talk 14:03, 2 August 2017 (UTC)

Break

@Alex Shih: Thanks very much. I tweaked the wording a little in the course of placing within the article. Coretheapple (talk) 14:17, 2 August 2017 (UTC)

Alex Shh was addressing the COPYVIO issue only. The stuff here was already in the article. Shortly after all this broke yesterday I had added content about this, here, which Whizz40 then improved and then I further improved. Also as I mentioned in my edit note when I removed this, as well as above, the content isn't accurate (it contradicts sourced that was already in the article, sourced to refs that go into this in depth. "It is in a source" is not a good reason to add something to an article like this. I've removed it. Jytdog (talk) 17:21, 2 August 2017 (UTC)

This specific point is not addressed by the text you added above. It's been reported on both sides of the Atlantic in almost exactly the same way in two reliable secondary sources, BBC and Washington Post. It's relevant to the topic and informative to understanding why different expert opinions could arise regarding whether or not to go ahead with an experimental treatment. Looks good to include to me. Whizz40 (talk) 17:46, 2 August 2017 (UTC)

That's correct. This point is mentioned in two sources and is directly relevant to the article. If both are wrong, take it up with the BBC and Washington Post. Coretheapple (talk) 18:16, 2 August 2017 (UTC)

I've added a reference and reinstated the material in question, as it was removed by Jytdog. Please desist from the edit-warring. Coretheapple (talk) 18:30, 2 August 2017 (UTC)

I have asked for comments at WT:MED, neutrally, here. Jytdog (talk) 20:19, 2 August 2017 (UTC) (struck, resolved enough as dead wrong thing is gone Jytdog (talk) 22:06, 2 August 2017 (UTC))

That's fine. It's always welcome for editors with subject area expertise to weigh in. Coretheapple (talk) 20:56, 2 August 2017 (UTC)

Again content this is wrong and misrepresents fundamental ethical issues here. The head of biomedical ethics at Harvard wrote a commentary in JAMA that was quoted in the NYT

....No one can demand nonbeneficial treatments simply by claiming that they are paying out-of-pocket. .... Today, for example, it would be extremely rare for a hospital in the United States to admit patients for the exclusive purpose of receiving homeopathic therapy or unproven stem cell infusions, regardless of how much the patient paid. ... progress occurs through careful application of the scientific method. While the most trustworthy advances come through the performance of well-designed trials, sometimes experimental treatments based on theoretical considerations alone may lead to major breakthroughs. But such successes are rare, and to be worth trying they must meet a threshold of scientific plausibility that transcends theoretical possibility. Whether the proposed nucleoside treatment meets that threshold is a legitimate matter for debate, but based on the lack of either animal or human data to support the use of this approach, as well as evidence of severe neurologic injury that could not be reversed in any case, the consensus of respected experts in the United Kingdom was that it did not. ...Considerations of the best interest of patients and of fairness are part of the answer, but they need to be bolstered by a reaffirmation of the scientific values at the core of the profession as well as a commitment to upholding the integrity of medical practice by refusing to provide treatments that fail to meet a reasonable threshold of scientific justification.

Again, the content that was added does reflect the two sources offered. These sources are popular media that got a complex issue wrong, and it is a violation of UNDUE (not to mention the mission of WP to provide readers with accepted knowledge) to add content based on them. It is just dead wrong - doctors and ethical committees in the US do not put people at risk for treatments that cannot benefit the person being put at risk. We do not use people as guinea pigs. This is a fundamental principle of medical ethics. Jytdog (talk) 21:09, 2 August 2017 (UTC)

To be very clear the content that is drastically wrong is " it may be considered ethically appropriate to give experimental treatment, even if the treatment is not expected to help the patient, on the ground the knowledge may help other patients in the future". it is not just inappropriate, it is considered unethical in the real world to the extent that people would lose their license to practice medicine if they did this, and it would lead to investigations as to how it was allowed to happen. Jytdog (talk) 21:18, 2 August 2017 (UTC)

A significant difference in the way the US & UK approached the case is that Dr. Hirano was willing to try the nucleoside treatment for Charlie Gard, even after conceding low chance of clinical improvement, while the UK doctors were not willing to proceed with treatment. Allowing this experimental treatment to go forward for Charlie Gard was also supported by NewYork–Presbyterian Hospital. Do you have any sources to support that Washington Post and BBC is in error, because it seems in line with the basic facts of the case. --DynaGirl (talk) 21:28, 2 August 2017 (UTC)

No, this is not true. What Hirano actually testified is very different than that. And the key thing is that Hirano said he would defer to the ICU team if Charlie were at his own hospital. And the sourced content I provided based on other sources, and what is above, show that the BBC and WaPo got it wrong on this. Jytdog (talk) 21:44, 2 August 2017 (UTC)

There is some nuance here. There are two contexts in which -- with scientific justification and with informed consent - people are given treatments that are not intended to benefit them. In Phase I trials healthy volunteers are given an experimental treatment only to learn if it is toxic or not (no expectation of benefit). And in Phase II and Phase III, some people are given placebos instead of the drug. But this is the same worldwide, and the US and and the UK are not at all different. Trials like that are done under the authority of national laws and under the supervision of local ethics committees/ institutional review boards.

Please keep in mind that the GOSH doctors were working in-process - they were in the process of applying for approval from their ethical committee to give the experimental treatment, when they thought that there would be potential benefit. Hirano would have had to do the same thing at NYPH before he actually could give the treatment to Charlie. That committee would not have allowed him to give the treatment 'if there was no benefit to Charlie. Jytdog (talk) 21:52, 2 August 2017 (UTC)

(ec) responding to 21:44: No, the material you've posted doesn't contradict the BBC and Washington Post articles. If you any sourcing that does, by all means post it. Barely a day goes by without an editor claiming that something is wrong based on personal knowledge. Sometimes they claim to be experts, sometimes they claim to be relativesa of BLPs. I know one son of a BLP subject who insists his dad was assassinated by the CIA, when the reliable sources say he died of a heart attack. That's why we go with the reliable sources. Coretheapple (talk) 21:54, 2 August 2017 (UTC)

At least in theory, heart attacks and CIA (or KGB) assassinations aren't mutually exclusive. InedibleHulk (talk) 22:24, 3 August 2017 (UTC)

True, but the sourcing for such claims is usually better than a TV movie, which was the source being offered in the article I had in mind. Coretheapple (talk) 22:39, 3 August 2017 (UTC)

I've yet to see a TV movie get anything right. Good call. InedibleHulk (talk) 01:36, 4 August 2017 (UTC)

As for your subsequent comment: Again, an editor's personal take on events in the news is original research and really doesn't help us. Coretheapple (talk) 21:57, 2 August 2017 (UTC)

I've combined and reduced those sections. I think we should find academic sources for that aspect, because one reading was that doctors in the US will experiment with little regard for the patient. We can take time to look for good sources. SarahSV ^(talk) 21:59, 2 August 2017 (UTC)

The NYPH announcement says: "New-York Presbyterian Hospital and Columbia University Irving Medical Center have agreed to admit and evaluate Charlie, provided that arrangements are made to safely transfer him to our facility, legal hurdles are cleared, and we receive emergency approval from the FDA for an experimental treatment as appropriate" That is very carefully worded. They did not say they were going to give the treatment. They did agree to admit and evaluate. Jytdog (talk) 22:00, 2 August 2017 (UTC)

• It would also help to add something about the ethics committees. SarahSV ^(talk) 22:02, 2 August 2017 (UTC)

• this is good enough - the dead wrong content is gone. I will remove the request for comments from WT:MED. Jytdog (talk) 22:05, 2 August 2017 (UTC)

• It may be helpful to have, fairly high up, a "Background" section providing the ethical and legal framework. Right now things tend to be scattered around a bit. Coretheapple (talk) 22:06, 2 August 2017 (UTC)

• Good idea. SarahSV ^(talk) 22:09, 2 August 2017 (UTC)