Should You Announce on Facebook That You Had a Colostomy?

Arthur L. Caplan, PhD


July 15, 2016

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Hi. I'm Art Caplan at the Division of Medical Ethics at NYU Langone Medical Center. At the risk of being declared a total dinosaur, I want to talk a little bit about how we deal with patients who want to put all sorts of medical information up on the Internet. Whether it's on Facebook or other forms of social media, all kinds of things are being posted by patients about their health conditions.

Recently, a young woman decided to put up some information about her Crohn's disease. She said that she had to have a part of her intestinal tract removed. She was now using a bag, and she wanted to talk about the fact that although it's certainly not something that is desirable, it's also not something that ought to make her a pariah. She felt that it was useful to share information about it with others.

When I heard this, I got nervous. This is where the dinosaur factor comes in. I'm not used to violating privacy—even when the patient or, in the case of younger people, people who can't really consent to do this, start to post. I keep referring to myself as a dinosaur because when I look at the Internet, I'm surprised by the types of things that are up there: who had their drunken binge and who's mad at whom in the world of romance and what your ex is up to in terms of their dating life. On and on it goes. Almost everything is fair game, so what's one instance of Crohn's disease?

But if a patient were to ask me or you, I'd say, "You ought to think hard about this." First of all, there are people who, for various reasons, might want to use your medical information against you. They may not want to sell you disability insurance. They may not want to sell you long-term care insurance. Or they may not want to hire you because you have a chronic condition; you could be expensive. Maybe you're going to be out from work for more days than other people might be.

And people do look through the Internet. I've seen it happen with college applications. College admissions officers take a peek at what's up there under your name, and if they see things that make them nervous and it's a competitive situation, they may pick the other person instead of you.

Patients need to understand that information lives on the Internet forever. When they are thinking about putting something up, even if it's just on a whim, they have to realize that it'll be there for 10, 15, or 20 years. It may be something that they don't care about right now, but maybe later they won't want it to be discovered. So, in my view, we've got to exercise judicious caution when it comes to what patients put up on the Internet. If they ask, I would advise them to think twice about what it would look like 10, 15, or 20 years from now if that post were up there.

Although I don't want to fall into that dinosaur, old-school line of thinking, I do think that there is an opportunity to remind people that not everything that is up on the Internet is something that they're going to be proud of in the future. I'm Art Caplan from the Division of Medical Ethics at NYU Langone Medical Center. Thank you for watching.


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