Re: [Gendergap] Marfan syndrome image (Neotarf)

As far as consent, I have only seen two types of medical consent forms. One is a consent to treatment when the client first enters the system. No provider will treat someone without that. There are also specialized consent forms for various procedures, to show that the client has received information about a particular procedure and understands the risks beforehand, that is, "informed consent". Medical consent forms will often, perhaps almost always, have a section about photographs, especially if it's a teaching hospital. The implication is always that any photos would be used for training purposes. Here is a sample medical consent form that has exactly that sort of language: "I agree to have photographs taken for medical study or research", and also a phrase that the patient will not be identifiable. http://www.bestmedicalforms.com/wp-content/uploads/2014/11/Diagnostic-1.jpg In my experience, people do not read such forms, they just sign them. Perhaps they are in distress, or perhaps they believe they must sign in order to get treatment. So I don't believe a medical consent form gives the kind of consent needed to upload a photo from a medical journal for a WP article. I agree the photo is disturbing on many levels. One is that there is no way of knowing whether the subject is being exploited. Years ago, western medical texts used to be full of photos that were obviously from socio-economically disadvantaged areas. So, "legal in some country in the Global South" is probably a poor standard to apply to choosing medical photos. Also, imagine you or someone in your family being newly diagnosed with this condition and coming across this photo that shows someone with the condition having a mental deficiency, which is obviously not part of marfan, and perhaps also being treated in a questionable manner. Maybe "portrays the disease accurately" and "portrays a person with the condition with dignity" would be better standards to follow. The article is still lacking clear illustrations for the eye and aorta conditions that go with it. There are much better ones online, but not with the right copyright status. Also scoliosis--the WP article has several good illustrations for that. https://en.wikipedia.org/wiki/Scoliosis This still leaves the original problem unaddressed, which is how to find copyright-free medical images. The Marfan Foundation links to a series of very positive "What does Marfan Syndrome look like" images on Flickr, but again they are copyrighted. https://www.flickr.com/photos/nationalmarfanfoundation/albums/7215761264334… Perhaps the ultimate solution will be to partner with some of these organizations that are concerned with patient advocacy and get them to upload some of their photos. On Sat, Aug 6, 2016 at 3:56 AM, Ellie Kesselman <myindigolife(a)gmail.com> wrote: