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Is your doctor spying on your tweets? Social media raises medical privacy questions

A friend recently brought to my attention a disturbing question from a psychiatrist working with a transplant team: Should she be checking the sobriety claims of liver transplant candidates by looking on their Twitter and other social media sites? That question merits discussion because it’s clear both doctors and patients are entering a new world of uncertain medical privacy due to Twitter, Facebook, Google+ and other outlets.

In this case, the doctor was asked to offer an opinion about a young man’s eligibility for a liver transplant. The medical team would not take him if he was still drinking. The doctor knew the young man had a history of at least one binge-drinking episode more than a year ago that resulted in a car crash. Since then, both the would-be transplant candidate and his mother said he had been sober.  

The psychiatrist was ready to recommend admission to the liver transplant program when she received a photo by email of the young man in a bar. Someone on the transplant team had thought to check the guy’s Twitter account. There he was for all the world to see, surrounded by booze, hoisting a cold one in a picture he himself had posted.

If you are still drinking you are not going to get into any liver transplant program. The picture was probably enough reason to turn away the young man —meaning in all likelihood a death sentence.

The situation raises vital questions about privacy and doctor-patient relationships that simply did not exist before the social media explosion.

Should this doctor or any health care professional have checked the transplant candidate out on social media? I can’t find any ethical guidelines that say no. But even if ethical restrictions existed, it is probably fair to assume that a lot of doctors and those who work with them, many who grew up with Facebook and Twitter and the like, will be tempted to do so.

How is that going to happen, you ask, when most doctors barely have time to see a patient much less spend hours hunting on the Internet? You have to remember now that anyone in the doctor’s office or out in the community can look at your social media profile and rat you out. And a lot of doctors make their living checking out the reliability of what patients say.

Take for example, you say your back really hurts and you are disabled — let’s take a peek at your Facebook page to see if you manage to hit the tennis court, the jogging path or the golf links. Promise to be abstinent due to your venereal disease—what are you doing on dating sites on Craigslist? Swear to stay away from fatty foods and high calorie treats—why did your doctor just read a review by you of barbecue joints on Yelp or Zagat?

Presuming doctors, their helpers or your neighbors are going to look, ethical standards or not, shouldn’t patients be told if someone does? I think so. I think the transplant candidate had the right to know that he tweeted himself right out of a shot at a liver transplant. And you need to realize that information you put up on social media sites may wind up being used by your doctor, hospital, psychologist, school nurse or drug counselor.

Right now there are no rules or even suggestions to guide doctor-patient relationships over the Internet. Both now have new ways to look at one another outside the office or exam room. If they are going to continue to trust one another then we need to recalculate existing notions of medical privacy and confidentiality to fit an Internet world where there is not much of either.

Arthur Caplan, Ph.D., is the head of the Division of Medical Ethics at NYU Langone Medical Center.