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Who owns patient images following patient's death?
Control of images, consent can be murky issues
You and a colleague have authored a clinical monograph on pelvic fractures, and the article is with the journal's editor, being prepared for publication. The editor contacts you asking for one or two more images, to add visual appeal to the layout; a search through your facility's database yields a black-and-white photograph and an X-ray that apply, so you forward them and they are used in the article.
Is it necessary to ensure that the patients whose injuries are depicted in those images gave consent to have them published? Because of the nature of the images, are they so anonymous that confidentiality is not a concern? Who owns patients' images when consent cannot be obtained, particularly when the patient has died?
"When you have a clinical image, such as a medical photograph, whether or not that patient has given consent for that image to be used, once you upload it into a database and it gets downloaded, it's gone," says Erika Goble, MA, an anthropologist and researcher with the University of Alberta Relational Ethics in Healthcare Program in Canada.
Goble, who has for several years researched the use of images of the dead, says she has found that there is uncertainty among clinicians on the issues of consent (when it's necessary, how broadly it applies), anonymity, and the value of education vs. the need for consent when using "unidentifiable" images.
"Education and research are held up as the single most important reason to use images," she says. "I have heard people say researchers and teachers should be able to use the images with proper acknowledgement" even if consent has not been obtained.
Approaches tried for consent
When an image is of a dead person — whether the person died in a disaster and his photograph appears in newspapers or died in a hospital and her images remain in the database — is it possible to secure consent?
Obtaining consent from a grief-stricken family can be troublesome, says Goble, because they are being asked to consent during a time of stress. The same applies to a patient who grants permission for educational use of images obtained during surgery, for example, but who decided months or years later that he no longer wishes the images to be used.
"But once the image is out there, how do you regain control?" asks Goble, who says this is a fundamental weakness behind one approach to consent, called "ongoing consent," in which the person depicted in the image can "cancel" consent at any time. But once the image has been published or downloaded, it is difficult, if not impossible, to recapture.
"Cross-usage is when ethical issues tend to pop up," Goble continues. "Part of the problem is that what we expect from people who get these images is different, and the expectations of the people giving consent is different. And if someone is dead, how do you negotiate it?"
Clinicians are becoming more aware that use of "anonymous" images does not necessarily replace privacy or consent obligations, Goble says.
The British Medical Journal set strict policies a few years ago on use of pictures of patients. Authors must have patients' written consent for any photos, or they are not accepted for publication.
"This applies even when an image only shows something that seems unlikely to lead to identification of the patient — for example, a small skin lesion or a single toe," BMJ wrote in a 2005 editorial.1 "Patients can and do recognise themselves, especially those with unusual or rare conditions. And we know that masking someone's eyes does not prevent them from being recognised, a practice we abandoned years ago."
Anonymity difficult to achieve
The touring exhibit Body Worlds, created by German scientist and physician Gunther von Hagen, is controversial not only because of the graphic exhibition of "plastinated" human bodies stripped of skin, but also for questions about the consent issues it raises.
Best thing to do is to get people to be more conscientious and thoughtful, in putting these images out there in the first place. Public displays of the dead, whether physical exhibits or published photos, are so commonplace that we scarcely notice them, Goble asserts; for example, when a disaster occurs and photos of the dead are included in newspaper accounts, she says, "we hardly notice."
The Body worlds site (www.bodyworlds.com) states that the bodies included in the exhibit "belonged to people who declared during their lifetime that their bodies should be made available after their deaths for the qualification of physicians and the instruction of laypersons."
"Von Hagan says he has made his models anonymous by stripping them of their skin, but I was able to put the skin back on one of the figures on my computer using Photoshop, and it was really quite easy to see what the person might have looked like," she recalls. "It's very hard to make an image completely anonymous, so it's easier to treat an image as if it's not anonymous. People are familiar with their bodies, so even if you cut off the head [in using photos], it's possible someone flipping through a journal might recognize themselves."
Exercise care in use of images
Goble says clinicians can find themselves in an ethical bind when deciding on the use of images from their institution's database. While the medical photographer might have the responsibility of securing consent, once the image is in a database accessible to many people, some control over that image is lost.
"X-rays, MRIs, CT scans — they are unidentifiable in most cases, and researchers can use them however they choose, but they are still scans of someone's body," Goble points out. "I came across a study where people in an emergency department were asked if they would give consent for use of medical photos of themselves. Eighty-four percent said they would, but 53% of those said they would refuse if the photo ended up on the Internet."
In delivering presentations about the use of images, Goble says she uses images to illustrate her program, and no one has ever asked her to justify using the pictures.
"It is startling that no one asks — it seems so natural and a given that the images would be used," she says. "I think we should question that it is so natural, and be more attentive.
"There is a shift in North American culture to being more visual. When you hear about a disaster, you turn on the [television] news, because you want to see it to believe it, as proof it happened. But the images around disasters tend to be of the dead, and we need to question how easily we accept those images, and what that means to us as a society."
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