About them

Courtesy of the excellent bioephemera's Jess Palmer comes this item of news, which concerns photographs of patients taken at the University of New Mexico Hospital and posted to a website. The photographs were reportedly close-ups of injuries being treated--no faces or patient-identifying features were shown. The employees who took and posted the photos have been fired, and several others have been disciplined as a result of these events.

My initial response to this was, "What's the big deal?" The implication of the firings is that taking someone's picture--even if it's not possible to identify the person by that picture--violates a right. But if anonymity is maintained, it didn't really seem to me that anything, or anyone, was violated. (Here, it is worth noting that authorities were unable to notify patients of the infringement due to their inability to identify the patients from the photos.)

Issues around patient confidentiality fall under the umbrella of the ethical principle of autonomy. In the Belmont Report--the manifesto on which much of the regulation of human subjects research is based--that principle is tied to self-determination. Anyone respecting self-determination is called on by the report's writers to "give weight to autonomous persons' considered opinions and choices." In practical terms, that means that you determine how--and whether--you're represented when your medical record is published for public consumption.

But what if you can't be identified by the information published? If anonymity is ensured, is consent even an issue?

The short answer is, yes, in large part due to the fact that anonymity isn't what it used to be.

In an editorial in the British Medical Journal published in the mid-1990's, Richard Smith gives a nice chronology of the discussion around this issue. He notes that the medical literature used to be the exclusive domain of medical professionals. Back then, even if a patient could be identified by features of a photograph or a case report, they were identified by other doctors in the context of what was arguably an academic discussion--even if it was a very broad one. No more anonymity was needed than the minimum allotted in casual conversations among colleagues.

What's changed, Smith notes, are the readers. In the age of the Internets, medical literature can now be read by anyone, including patients. In this climate, the entire definition of anonymity changes: it's not so much about whether we can identify a patient, but rather, whether patients can identify themselves. (Smith suggests that it's also about whether curious journalists can identify patients, although I don't know of any cases where this has been a problem.)

In a later article, different authors suggest routinely obtaining consent for use of patients' images in publications, regardless of the certainty of true anonymity associated with their publication. They also suggest that inasmuch as photos constitute part of a patient's medical record, and inasmuch as the medical record theoretically belongs to the patient, there may also be "rights akin to ownership" associated with medical photographs. This means that patients would potentially be compelled to give consent for their photographs to be published, more because of rights of ownership than because of a right to anonymity.

In many institutions, medical photography is now routinely accompanied by a consent process. Even in cases when it seems highly improbable that a patient could be recognized from a photograph, their written consent is obtained before that photograph is taken. Obtaining consent is less routine, but still common, before publishing case reports or small case series about patients. It doesn't seem that a lawsuit alleging breach of confidentiality would go far in the case of a patient who has found themselves described in a case report; however, it's exactly that kind of event (although it was a complaint rather than a lawsuit, and one that seems to have been highly avoidable) that started much of the discussion, to begin with.

It sounds a little crazy, I know. But the goal is to protect patients from what many of them consider to be a pretty unpleasant scenario: seeing a depiction of their diseased or dysmorphic selves in a place they didn't plan to.

Although I don't know the details of the UNMH case, it seems that in an area where the ethics are a little blurry, firing the employees for what they did might have been hasty. It's hard to say for sure without knowing what exactly happened.

Naturally, issues like this provoke some introspection: I'm not sure how good I am at hiding the identities of the patients whose stories I share here. Sure, I change many details about each patient's story--but do I change enough? The test, in my case, would be a patient reading a story about themselves and, knowing my identity, being unable to recognize that the story was about them. I hope I've achieved that kind of true anonymity in each case, but it's hard to be certain.

In several cases, if I wanted to provide true anonymity, I'd have to change so many details that most of the meaning would be lost. I suppose that's a small price to pay to avoid giving someone the sense that they've lost control over the telling of their own story.

P.S. For the latest in great nurse/other medical blogging, check out this week's Change of Shift. Mmmm, piratey!


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Thanks for writing this! It's an issue I think isn't getting enough attention - people really don't seem to be comfortable with what is and isn't private.

I'm writing something up right now from the genetic privacy angle - hopefully I'll post it next week. But I think we can all agree the internet has fundamentally changed the issues surrounding sharing sensitive information.

I think people differ greatly on this issue. For example, if it were completely unidentifiable as my own, I would have no problem with a picture of my naked ass being posted on the Internet. Others would be absolutely horrified by the prospect.

I am glad you recognized her dread about pronouncement as something more than paperwork. One part of my residency I loved was the once a week the hospital chaplain/counselor/ethics professor would round with us.

I think people differ greatly on this issue. For example, if it were completely unidentifiable as my own, I would have no problem with a picture of my naked ass being posted on the Internet. Others would be absolutely horrified by the prospect.

For the record, a friend of mine is in psychiatry, and he's actually the sanest of our group of friends. I think the overal sanity level of psychiatrists is just a well camoflauged secret.

I recently heard of the site from a Signout reader named Benjamin Langer, who himself has a very nice critical piece on intelligent design in the current edition of SCQ. Why I hadn't heard about this publication before, I don't know. I can only hypothesize that I perhaps have been living under a rock.