Last visit was: Wed Jul 23, 2014 5:55 pm
It is currently Wed Jul 23, 2014 5:55 pm



 [ 21 posts ] 
Wikipedia and Wikipediocracy medical ethics 
Author Message
Habitué
User avatar

Joined: Sat Mar 17, 2012 11:58 pm
Posts: 2265
Wikipedia User: Bali ultimate
Wikipedia Review Member: DanMurphy
Unread post Wikipedia and Wikipediocracy medical ethics
A very close family member has been diagnosed with a very serious cancer. But, there was marginally good news today. There's a recently approved drug (but clinically studied for many years) that, given the specific nature of the family member's cancer, has a reasonably good chance of either stopping the growth of the cancer or curing completely - and without nasty side-effects.

This drug is hellaciously expensive in the US, but is much cheaper in other countries. In the process of doing some buyers research Google threw up the Wikipedia infobox for the drug. Just for "laughs" I opened up the Wikipedia article. The third sentence contains a 100% inaccurate claim that would be immensely distressing to any ill-informed victim of this kind of cancer (or their friends and family members) if they were to read it.

Yet, my inclination is not to correct this dangerous and frightening untruth (which has been there for well over a year).

What say youse?


Tue Nov 05, 2013 8:55 pm
Global Moderator
User avatar

Joined: Wed Mar 14, 2012 11:28 pm
Posts: 821
Location: San Jose, CA, USA
Wikipedia User: Alison
Wikipedia Review Member: Alison
Actual Name: Alison Cassidy
Unread post Re: Wikipedia and Wikipediocracy medical ethics
If it's dangerous and frightening, I say document it and fix it. I'd not like to stand by and watch someone come to harm as a result (even though it's not your fault it's there, nor your responsibility). Flag it *loudly*, by all means, but ensure it either gets sorted or becomes public knowledge quickly.

EDIT: Nobody here should ever feel obliged to fix anything on Wikipedia - it's a Sisyphean task anyway - but when very real harm could come to someone .... ?

_________________
-- Allie - Breakin' da WikiHabit™


Tue Nov 05, 2013 9:29 pm WWW
Regular
User avatar

Joined: Sat Jun 02, 2012 6:35 pm
Posts: 468
Wikipedia User: Bielle
Wikipedia Review Member: Bielle
Unread post Re: Wikipedia and Wikipediocracy medical ethics
I'm inclined to agree with Alison, if only for selfish reasons: what if I am the person looking for the information?


Tue Nov 05, 2013 11:31 pm
Site Admin
User avatar

Joined: Wed Mar 14, 2012 11:21 pm
Posts: 739
Unread post Re: Wikipedia and Wikipediocracy medical ethics
As a non-medical professional, you do not have an affirmative obligation to correct or annotate the article.

However, I partially agree with Allison, in that my opinion is that you should go beyond your minimal affirmative duty, and loudly label the article as inaccurate. I do NOT believe that you should "fix" the information, as that may contain the implication that you have specialist knowledge that the opposite is true, which you do not. Simply label the article as containing inaccurate and potentially harmful information.

I give this advice from a legally-informed ethical standpoint, not as a Wikipedia-attacker. I believe that EVERY Wikipedia article on any medical or health topic should contain a big disclaimer.

You have my sympathy regarding your relative. I am, as I write this, writing trying to write a eulogy for my younger brother, who died last week of brain cancer.


Tue Nov 05, 2013 11:46 pm
Habitué
User avatar

Joined: Sat Mar 17, 2012 11:58 pm
Posts: 2265
Wikipedia User: Bali ultimate
Wikipedia Review Member: DanMurphy
Unread post Re: Wikipedia and Wikipediocracy medical ethics
Bielle wrote:
I'm inclined to agree with Alison, if only for selfish reasons: what if I am the person looking for the information?

I say dangerous because it might lead someone to avoid life-saving medication or perhaps kill themselves as a hopeless case. That little tidbit was added by one of their most enthusiastic medical amateurs - he's a very, very busy bee (and appears to be a "paid editor" in the medical writing field). I'm going to leave it be. Think of all the thousands of examples there must be. This is the first time I've ever looked at a Wikipedia drug article with a personal interest afoot. Thank God I know better. The vast majority of Wikipedia consumers don't.

On balance, I think the ethical thing is to allow the dangerous errors to proliferate to such an extent that blithe dismissals that the "system works" start leading to lawsuits. But it's an interesting thought experiment (I'll reveal the article here in a few days, I guess, as a compromise).

EDIT: Oh (to Bielle): I assume you're bright enough to get medical information from reputable sources. Right?

EDIT 2: I just checked out the traffic. The article has averaged over 9,000 reads a month for the past 3 months.


Tue Nov 05, 2013 11:49 pm
Habitué
User avatar

Joined: Sat Mar 17, 2012 11:58 pm
Posts: 2265
Wikipedia User: Bali ultimate
Wikipedia Review Member: DanMurphy
Unread post Re: Wikipedia and Wikipediocracy medical ethics
greybeard wrote:
As a non-medical professional, you do not have an affirmative obligation to correct or annotate the article.

However, I partially agree with Allison, in that my opinion is that you should go beyond your minimal affirmative duty, and loudly label the article as inaccurate. I do NOT believe that you should "fix" the information, as that may contain the implication that you have specialist knowledge that the opposite is true, which you do not. Simply label the article as containing inaccurate and potentially harmful information.

I give this advice from a legally-informed ethical standpoint, not as a Wikipedia-attacker. I believe that EVERY Wikipedia article on any medical or health topic should contain a big disclaimer.

You have my sympathy regarding your relative. I am, as I write this, writing trying to write a eulogy for my younger brother, who died last week of brain cancer.

Thanks for your sympathy.

Is there a Wikipedia template for this? Do you suggest I just write something in a big font across the top? Then I'll get reverted. Then I'll be an "edit warrior!" Can't have that.

Even if I was a medical professional, my ethics wouldn't allow me to touch it. My participation would only enable the callous, vicious, dangerous children of Wikipedia to create more mischief.

The medical stuff is more stomach-turning than almost everything else at that place.

(You have of course my sympathy for your brother as well.)


Wed Nov 06, 2013 12:09 am
Site Admin
User avatar

Joined: Wed Mar 14, 2012 11:21 pm
Posts: 739
Unread post Re: Wikipedia and Wikipediocracy medical ethics
Surely some Wikipidiot must be aware of some approved tag for articles like this? That's what I'm thinking, in the hopes it won't get reverted.

Edit: it looks like {{disputed}} does it, unless it rises to {{hoax}}. The other possibility is {{Science review}}.


Wed Nov 06, 2013 12:31 am
Regular
User avatar

Joined: Sat Jun 02, 2012 6:35 pm
Posts: 468
Wikipedia User: Bielle
Wikipedia Review Member: Bielle
Unread post Re: Wikipedia and Wikipediocracy medical ethics
DanMurphy wrote:
Bielle wrote:
I'm inclined to agree with Alison, if only for selfish reasons: what if I am the person looking for the information?

I say dangerous because it might lead someone to avoid life-saving medication or perhaps kill themselves as a hopeless case. That little tidbit was added by one of their most enthusiastic medical amateurs - he's a very, very busy bee (and appears to be a "paid editor" in the medical writing field). I'm going to leave it be. Think of all the thousands of examples there must be. This is the first time I've ever looked at a Wikipedia drug article with a personal interest afoot. Thank God I know better. The vast majority of Wikipedia consumers don't.

On balance, I think the ethical thing is to allow the dangerous errors to proliferate to such an extent that blithe dismissals that the "system works" start leading to lawsuits. But it's an interesting thought experiment (I'll reveal the article here in a few days, I guess, as a compromise).

EDIT: Oh (to Bielle): I assume you're bright enough to get medical information from reputable sources. Right?

EDIT 2: I just checked out the traffic. The article has averaged over 9,000 reads a month for the past 3 months.


Probably. I say that cautiously because those of you who have been through life-altering (or ending) illnesses and accidents within your intimate circles will know that we latch onto the strangest things under such pressures.

If you want to do more than a disclaimer, with an edit war attached, you could send a note to Scray (T-C-L). He has a medical background and seems generally to behave in a sane manner.

To all those grieving, I extend my sympathies.


Wed Nov 06, 2013 1:39 am
Gregarious
User avatar

Joined: Fri Mar 16, 2012 9:01 am
Posts: 684
Location: Troll country
Unread post Re: Wikipedia and Wikipediocracy medical ethics
Bielle wrote:
To all those grieving, I extend my sympathies.

+1

I think the suggestions of Greybeard is fine, say, putting {{disputed}} on the top.


One thing en.wp medical articles *is* good for (especially for those whose native language is not English) are those links to the left to articles in other languages.
Those links are virtually never wrong. (I have only seen them wrong on some places with the same names)

I know people who have been abroad, and been diagnosed with something completely incomprehensible, just to go to the article on wp, click on the link to the article in their native language, and find out what exactly they were diagnosed with...


Wed Nov 06, 2013 3:05 am
Critic

Joined: Thu Jul 19, 2012 3:51 am
Posts: 236
Location: Sydney, Oz
Wikipedia User: Casliber
Wikipedia Review Member: Casliber
Unread post Re: Wikipedia and Wikipediocracy medical ethics
DanMurphy wrote:
A very close family member has been diagnosed with a very serious cancer. But, there was marginally good news today. There's a recently approved drug (but clinically studied for many years) that, given the specific nature of the family member's cancer, has a reasonably good chance of either stopping the growth of the cancer or curing completely - and without nasty side-effects.

This drug is hellaciously expensive in the US, but is much cheaper in other countries. In the process of doing some buyers research Google threw up the Wikipedia infobox for the drug. Just for "laughs" I opened up the Wikipedia article. The third sentence contains a 100% inaccurate claim that would be immensely distressing to any ill-informed victim of this kind of cancer (or their friends and family members) if they were to read it.

Yet, my inclination is not to correct this dangerous and frightening untruth (which has been there for well over a year).

What say youse?


I guess it is what is more important - highlighting problems with wikipedia or letting something go which might greatly distress another person in a similar situation to yours. The other benefit is alerting folks and having some eyes search for and add some Secondary Sourcing, which might improve the article for the next person that clicks on it. Alternately, some sources might highlight why the drug might not be as readily available as first impressions might suggest was a good idea. Anyway, this is all conjecture until we know what the article is. Your call.
Cas


Wed Nov 06, 2013 11:16 am
Trustee
User avatar

Joined: Thu Mar 15, 2012 5:07 pm
Posts: 6183
Location: Pennsylvania
Wikipedia User: Thekohser
Wikipedia Review Member: thekohser
Actual Name: Gregory Kohs
Unread post Re: Wikipedia and Wikipediocracy medical ethics
I would just post a notice to the Sole Founder, since he solely founded the project -- it should be his problem to take care of.

_________________
"...making nonsensical connections and culminating in feigned surprise, since 2006..."


Wed Nov 06, 2013 1:26 pm WWW
Habitué
User avatar

Joined: Mon Jun 03, 2013 8:47 pm
Posts: 3572
Location: location, location
Unread post Re: Wikipedia and Wikipediocracy medical ethics
I was saddened to hear of the sorrows of others in this thread.

I would not presume to give advice about correcting a dangerous medical article in Wikipedia. I started a thread about WikiProject Medicine, titled "Doctor Wikipedia", in the News and Media form of this site: link. It has has become a general discussion of WP's 20,000 medical articles, of which more than 99% have "issues", according to the WikiProject's own evaluation.

The project has now created a Wiki Project Med Foundation, which is under dubious leadership-- including a physician who overstates his medical credentials, and another who is in the employ of major pharmaceutical companies, and is advertising his WP-writing services to others.

! happen to think that the WPM Foundation is falsifying the results of an "experiment" in student editing, in an effort to make it seem as if WP medical articles are accurate and trustworthy, and that it also manipulating data to make it appear if as if they are making progress towards a free, complete, and accurate medical encyclopedia-- even claiming that their articles are "peer-reviewed" (by random anonymous editors).

The 'Doctor Wikipedia' has now 128 posts long. I would appreciate it if others in this thread could take a look at it, and offer their comments.

_________________
former Living Person


Thu Nov 07, 2013 3:55 am
Regular

Joined: Sat Apr 14, 2012 3:35 am
Posts: 317
Wikipedia User: Anthonyhcole
Unread post Re: Wikipedia and Wikipediocracy medical ethics
Fix it or report it, and record it here. I'd very much like to know what the article and problem are. We need examples of dangerous or distressing medical content on Wikipedia if we're going to force remedies such as prominent disclaimers, pending changes protection and scholarly review.


Thu Nov 07, 2013 8:50 am
Trustee
User avatar

Joined: Fri Mar 16, 2012 3:01 am
Posts: 680
Location: God's Ain Country
Wikipedia User: Edeans
Wikipedia Review Member: Cedric
Actual Name: Eddie Singleton
Unread post Re: Wikipedia and Wikipediocracy medical ethics
Anthonyhcole wrote:
Fix it or report it, and record it here. I'd very much like to know what the article and problem are. We need examples of dangerous or distressing medical content on Wikipedia if we're going to force remedies such as prominent disclaimers, pending changes protection and scholarly review.

When will you finally realize that the Frei Kultur Kinder that control Wikipedia will NEVER allow such reforms for long, if at all? I have written for years (as have other critics) that the frei kultur radicals will see WP crash and burn before allowing such obviously needed improvements, which are damnable elitist heresy in their view. The involvement in any way of Wikipediocracy in such a reform project can only serve as an added assurance (not that any is necessary!) that it will be ruthlessly suppressed.

The only thing you can hope to achieve with such a project is to provide additional evidence that WP is beyond reform and undeserving of any further donations of time, money and effort (again, not that further proof is needed). The time such a project could have be viable; that is, 2005 or before; is long since past. Now is the time to mark down lessons learned and to discuss what shape a post-WP encyclopedia project should take.


Sat Nov 09, 2013 4:09 pm
Habitué
User avatar

Joined: Mon Jun 03, 2013 8:47 pm
Posts: 3572
Location: location, location
Unread post Re: Wikipedia and Wikipediocracy medical ethics
An open letter to pharma: please employ a Wikipedian
STweN, 13 June 2012 link
Quote:
Dr. Bertalan Meskó (@Berci) writes:
Dear Pharma Companies,

The place of Wikipedia in the dissemination of medical information online is indisputable now. If you want your customers to access information about your products from the quality perspective and in the simplest way, you have to deal with using Wikipedia.

Based on the pretty negative past encounters between pharma employees and Wikipedia editors (pharma employees trying to edit entries about their own products in a quite non-neutral way), we advise you to employ a Wikipedia editor if you want to make sure only evidence-based information is included in entries about your own products. Appointing someone from within your company as a “spokesperson” in Wikipedia who would perform all edits on behalf of the company is an excellent way to update those entries.

For more details, please see our open access social media guide.

But basically, we, Wikipedians, are more than open to starting a discussion about this with you.

I’m looking forward to working together.

Dr. Bertalan Mesko
Webicina.com
NCurse (T-C-L)
Quote:
My name is Bertalan Meskó, MD, PhD.
I've been contributing to the English Wikipedia since May, 2006. I became an administrator on 7 October, 2006.

I'm the maintainer of featured Portal:Medicine.
I'm the creator and the coordinator of Medical genetics WikiProject.
I'm the maintainer of Medicine WikiProject and Science collaboration of the month.

_________________
former Living Person


Sat Nov 09, 2013 4:38 pm
Gregarious
User avatar

Joined: Thu Mar 14, 2013 12:35 am
Posts: 979
Wikipedia User: it's alliterative
Unread post Re: Wikipedia and Wikipediocracy medical ethics
greybeard wrote:
I am, as I write this, writing trying to write a eulogy for my younger brother, who died last week of brain cancer.


Sorry to hear that Greybeard.

_________________
Triptych. A Live Journal I have under other pseudonym, w. email address: Tim Song Fan. My Arbcom Accountability Project: in German. In art.


Sat Nov 09, 2013 4:41 pm
Habitué
User avatar

Joined: Sat Mar 17, 2012 11:58 pm
Posts: 2265
Wikipedia User: Bali ultimate
Wikipedia Review Member: DanMurphy
Unread post Re: Wikipedia and Wikipediocracy medical ethics
I removed the offending material 3 days ago. I am somewhat surprised to report that it has not been restored (yet).

The article is Erlotinib (T-H-L). The offending material was the third sentence in the lede - "In lung cancer, it extends life by an average of 3.3 months." And also the first graph of the "Clinical applications" section:

Quote:
The manufacturer estimated that erlotinib can extend life by approximately 3.3 months. Some researchers call the drug "marginally" cost effective.[4]


These claims about "3.3 months" are incorrect and misleading. One could imagine a lung cancer patient whose doctor just recommended this drug reading the Wikipedia page and coming away very depressed. The false claim is a result of a complete misunderstanding of source material and a failure to keep up with changing understanding of how the drug works. The drug is in fact highly effective about 60% of the time for certain otherwise fatal types of lung cancer.

This frighteningly incorrect "information" was added by Wikipedia contributor "Nbauman." about 27 months ago. Nbauman appears to be Norman Bauman, who claims to be a professional medical writer.


Sat Nov 09, 2013 5:35 pm
Regular

Joined: Sat Aug 18, 2012 6:41 pm
Posts: 316
Wikipedia User: Roger Pearse
Unread post Re: Wikipedia and Wikipediocracy medical ethics
The question is not whether it should be changed, but -- given what we know about Wikipedia -- whether you want to dedicate your life to trying to fix it. For free.

It's worth one go, but no more. Unless, of course, you have nothing else to do with your life than fight with some ignorant troll. Which experience is, after all, why we are all here.


Fri Nov 15, 2013 9:40 pm WWW
Critic

Joined: Thu Jul 19, 2012 3:51 am
Posts: 236
Location: Sydney, Oz
Wikipedia User: Casliber
Wikipedia Review Member: Casliber
Unread post Re: Wikipedia and Wikipediocracy medical ethics
Been meaning to have a look. Will do so soon. Bit far removed from psychiatry but have had two relatives die of Ca pancreas so am interested.


Fri Nov 15, 2013 10:39 pm
Habitué
User avatar

Joined: Mon Oct 21, 2013 9:58 pm
Posts: 1395
Location: The Rocky Mountains
Wikipedia User: AfadsBad
Unread post Re: Wikipedia and Wikipediocracy medical ethics
roger_pearse wrote:
.... Unless, of course, you have nothing else to do with your life than fight with some ignorant troll.


I do love how the members of the bad science community, make up science for the main page, then get all up in arms that I write about it on my blog.

Did they correct the made up science?

No. But they scored points for DYKs on the main page; so, they're done with it.

Oh, and they're upset that I wrote about it. While, Bonkers the Clown corrected a few pieces of science garbage that other editors created.

Will the correct the made up or bad or dangerous medicine? Hold your breath until you're blue and see if they do.

:sick:

_________________
Yes, that's Orangey. And, yes, I'm cravenly hiding behind a user name.


Fri Nov 15, 2013 11:59 pm WWW
Critic

Joined: Thu Jul 19, 2012 3:51 am
Posts: 236
Location: Sydney, Oz
Wikipedia User: Casliber
Wikipedia Review Member: Casliber
Unread post Re: Wikipedia and Wikipediocracy medical ethics
enwikibadscience wrote:
roger_pearse wrote:
.... Unless, of course, you have nothing else to do with your life than fight with some ignorant troll.


I do love how the members of the bad science community, make up science for the main page, then get all up in arms that I write about it on my blog.

Did they correct the made up science?

No. But they scored points for DYKs on the main page; so, they're done with it.

Oh, and they're upset that I wrote about it. While, Bonkers the Clown corrected a few pieces of science garbage that other editors created.

Will the correct the made up or bad or dangerous medicine? Hold your breath until you're blue and see if they do.

:sick:

I cant do it in 3 minutes.


Sat Nov 16, 2013 1:07 am
 [ 21 posts ] 

Who is online

Users browsing this forum: Bing [Bot], CCBot [Bot], HRIP7 and 6 guests


You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.