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Revision as of 05:00, 29 July 2017 editHandsomeMrToad (talk | contribs)Extended confirmed users3,847 edits A couple of points about the RRM2B gene: Definition of "it"← Previous edit Revision as of 05:02, 29 July 2017 edit undoSlimVirgin (talk | contribs)172,064 edits InfoboxNext edit →
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:] the discussion above was opened before you restored this and therefore before your 2nd restoration. Please engage here. Neither edit note addressed the issue that this article is not about the boy and that the image of the hospital is bizarre (it is not "Charlie Gard") - look at it! (I added the image now) ] (]) 22:41, 28 July 2017 (UTC) :] the discussion above was opened before you restored this and therefore before your 2nd restoration. Please engage here. Neither edit note addressed the issue that this article is not about the boy and that the image of the hospital is bizarre (it is not "Charlie Gard") - look at it! (I added the image now) ] (]) 22:41, 28 July 2017 (UTC)
:Also the cause of death is probably wrong - it is probably ] but i have not seen a source stating that yet. ] (]) 23:01, 28 July 2017 (UTC) :Also the cause of death is probably wrong - it is probably ] but i have not seen a source stating that yet. ] (]) 23:01, 28 July 2017 (UTC)

*I've restored the infobox, minus the image (which is now in another section), and minus the cause and place of death. As the box has been in the article for some times, please gain consensus here to remove it. ] <small><sup>]</sup></small> 05:02, 29 July 2017 (UTC)


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Articles for deletionThis article was nominated for deletion on 12 July 2017. The result of the discussion was keep, withdrawn.

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 Misplaced Pages. Go to Charlie Gard and you'll land at Charlie Gard treatment controversy. Bmclaughlin9 (talk) 11:02, 4 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 (posted here)--Ozzie10aaaa (talk) 10:25, 11 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)

Another limit on benefits of nucleoside-therapy

WP:NOTFORUM Jytdog (talk) 22:40, 10 July 2017 (UTC)

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.


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)

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)

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

Thursday?

--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)

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?

WP:TALK#FACTSDoctorBiochemistry comments --Ozzie10aaaa (talk) 11:37, 18 July 2017 (UTC)

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.


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/ 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)
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 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 for mitochondrial diseases, among them, the so-called "nucleoside bypass therapy" 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 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 (talkcontribs) 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.

Article size

@Jytdog: A number of your edits have been cutting detail from this article based on a WP:NOTNEWS/WP:UNDUE argument: , , . 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. Misplaced Pages 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)

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:

-- 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)

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 Misplaced Pages 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)

unfortunately

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."

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)

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 Misplaced Pages. 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 Misplaced Pages 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.
Cite error: A <ref> tag is missing the closing </ref> (see the help page).
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), 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 Misplaced Pages 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)

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

  1. http://www.atsjournals.org/doi/pdf/10.1164/ajrccm.162.6.1-00
  2. Johnson SH, Gibbons VP, Goldner JA, Wiener RL, Eton D. Legal and institutional policy responses to medical futility. J Health and Hosp Law 1997;30:21–36.
  3. https://www.nytimes.com/2015/05/03/opinion/sunday/sandeep-jauhar-its-not-just-about-quality-of-life.html
  4. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3252683/#R48
  5. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3252683/#R48
  6. "Latest statement on GOSH patient Charlie Gard". Great Ormond Street Hospital. p. 3. Retrieved 24 July 2017.
  7. "Great Ormond Street Hospital v Yates & Ors EWHC 1909 (Fam)" (PDF). High Court of Justice. 24 July 2017. p. 3.
  8. "Latest statement on GOSH patient Charlie Gard". Great Ormond Street Hospital. p. 4. Retrieved 24 July 2017. Most recently, on 6 July, he co-signed the letter indicating that he had new information that changed the picture for Charlie, that brought this case back before the High Court

- 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:], ]. BBC summary of the case: ] 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)

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 bigoraphical 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 Misplaced Pages 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 (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)

Infobox

A "person" infobox was added today, in this diff. I have copied it here for now. This article is not about the boy but rather about the case. Am interested in folks' thoughts on this. This struck me when Doc James added the picture of the hospital to the infobox in this diff -- which was jarring. Jytdog (talk) 22:25, 28 July 2017 (UTC)

User:SlimVirgin the discussion above was opened before you restored this and therefore before your 2nd restoration. Please engage here. Neither edit note addressed the issue that this article is not about the boy and that the image of the hospital is bizarre (it is not "Charlie Gard") - look at it! (I added the image now) Jytdog (talk) 22:41, 28 July 2017 (UTC)
Also the cause of death is probably wrong - it is probably asphyxiation but i have not seen a source stating that yet. Jytdog (talk) 23:01, 28 July 2017 (UTC)
  • I've restored the infobox, minus the image (which is now in another section), and minus the cause and place of death. As the box has been in the article for some times, please gain consensus here to remove it. SarahSV 05:02, 29 July 2017 (UTC)

Charlie Gard
Part of Great Ormond Street Hospital
Born(2016-08-04)4 August 2016
London, England
Died(2017-07-28)28 July 2017
(aged 11 months 24 days)
Great Ormond Street Hospital
Cause of deathBrain damage
NationalityBritish
Parents
  • Chris Gard
  • Connie Yates
Categories:
Talk:Charlie Gard case: Difference between revisions Add topic