User talk:PCsci1

November 2023

Hello PCsci1. The nature of your edits gives the impression you have an undisclosed financial stake in promoting a topic, but you have not complied with Wikipedia's mandatory paid editing disclosure requirements. Paid advocacy is a category of conflict of interest (COI) editing that involves being compensated by a person, group, company or organization to use Wikipedia to promote their interests. Undisclosed paid advocacy is prohibited by our policies on neutral point of view and what Wikipedia is not, and is an especially serious type of COI; the Wikimedia Foundation regards it as a "black hat" practice akin to black-hat search-engine optimization.

Paid advocates are strongly discouraged from direct article editing, and should instead propose changes on the talk page of the article in question if an article exists. If the article does not exist, paid advocates are strongly discouraged from attempting to write an article at all. At best, any proposed article creation should be submitted through the articles for creation process, rather than directly.

Regardless, if you are receiving or expect to receive compensation for your edits, broadly construed, you are required by the Wikimedia Terms of Use to disclose your employer, client and affiliation. You can post such a mandatory disclosure to your user page at User:PCsci1. The template {{Paid}} can be used for this purpose – e.g. in the form: {{paid|user=PCsci1|employer=InsertName|client=InsertName}}. If I am mistaken – you are not being directly or indirectly compensated for your edits – please state that in response to this message. Otherwise, please provide the required disclosure. In either case, do not edit further until you answer this message. MrOllie (talk) 17:21, 27 November 2023 (UTC)[reply]

Hello MrOllie: No conflict of interest nor paid editing nor financial stake here. My full name is Paul Clement. I have a 36 year-old son with severe hemophilia A. I was a former HS science teacher and I am a science writer and have written dozens of articles on bleeding disorders and have coauthored three books on hemophilia and VWD. I have been the science editor and a contributing writer for LA Kelley Communications (a niche publisher of books and newsletters for the hemophilia community) for the last 25 years (https://www.kelleycom.com/) and recently rolled off as a six-year board member of the Hemophilia Council of California, where I still volunteer as a consultant. You can view my last book with Laurie Kelley at:

https://futurebks.com/CSB/GuideToLivingWithVWD/

I have some free time between projects and decided to update the gene therapy section because it is now six years out of date. Both the hemophilia A article and the hemophilia B article are in need of revision--I hope to be able to revise them in coming weeks. Paul PCsci1 (talk) 01:45, 28 November 2023 (UTC)[reply]

Medical content on Wikipedia has special sourcing requirements, which you can find at WP:MEDRS. The requirements are very stringent, even most articles in peer-reviewed medical journals will not meet them. Note in particular that press releases should never be used as sourcing, and Wikipedia must not promote or recommend particular vendors or their products. MrOllie (talk) 02:06, 28 November 2023 (UTC)[reply]

Thank you for the MEDRS link. I have read that page and several others. From what I have read:

First, according to Wikipedia, my post is not an advertisement or promotion--which seems to be your main concern.

Second, according to Wikipedia, my article is not "biomedical" information, save for one sentence about how the gene therapy works. I have added a reference for this sentence.

Wikipedia does not recognize trademarks nor trademark formatting: I have removed such formatting.

Your statement that "press releases should never be used as sourcing" is inaccurate. According to Wikipedia, press releases from the US Food and Drug Administration (FDA) clearly meet the standards of being "independent" sources and, as such, a press release is a perfectly acceptable source. The FDA, as well as the US Centers for Disease Control and Prevention (CDC), Health Canada, European Medicines Agency (EMA), European Commission (EC), and European Centre for Disease Prevention and Control (ECDC), all use press releases to communicate to the public their decisions and actions. In the case of an FDA action, the FDA press release is the only acceptable source.

I think you acted in haste in deleting my article without first taking the courtesy to initiate a talk. You might want to read the Wikipedia page Please do not bite the newcomers to refresh your memory of proper etiquette.

I am going to re-post my revised article. Would you prefer to restore my previous version and I update it, or that I post it directly? PCsci1 (talk) 17:17, 30 November 2023 (UTC)[reply]

Do not repost that content. Despite your protestations here, it was plainly promotional, and obviously does not meet Wikipedia's sourcing requirements. If you have read our policies and come away with the impression that a press release is the only acceptable source, you have definately misunderstood the policies. And lastly, "Please do not bite the newcomers" does not mean "Please let newcomers violate any and all policies as they like." If you are confused by any of this, I recommend you seek further input at WP:TEAHOUSE. MrOllie (talk) 17:26, 30 November 2023 (UTC)[reply]

I imagine you will next be deleting the entire Wikipedia article on this therapy because it is obviously “promotional?” And I imagine you will also be deleting the entire table of approved gene therapies in the Wikipedia gene therapy article because the table lists the name of approved products, the manufacturer and the approval date?

The article I wrote states the name of the product, manufacturer, date of approval and method of action. This is not promotional. It makes no mention of efficacy, cost, how to purchase, where to purchase, how to pay for the product, who has used the product, who plans to use the product, why the product may be good or bad for you, it is not advocating for the product, approving of the product or endorsing the product. It is obviously NOT promotional! Please describe exactly what you see as being “promotional.”

The gene for factor VIII was cloned in 1984 and for 30 years, the hemophilia community has been promised a cure for the disorder through gene therapy. To finally have a product approved is big news in the hemophilia community and this news should have been addressed on the Wikipedia hemophilia A page more than a year ago, rather than keeping a six-year old reference to a clinical trial. PCsci1 (talk) 20:45, 30 November 2023 (UTC)[reply]