Two years ago, a University of California Berkeley undergraduate was a subject in an MRI experiment at the Henry H. Wheeler, Jr. Brain Imaging Center on the UC Berkeley campus. She did it for the money: It paid $200 for two two-hour sessions, during which you lie motionless inside a large loud machine. During the first session, the persons monitoring the experiment could see that something was seriously wrong: The subject had a large mass in her brain. Clearly her life was at risk. But they didn’t tell her immediately what they had seen. (Later they claimed they “couldn’t” have told her, for legal reasons. A friend of hers who was present at the experiment was threatened with serious legal action if he told her.) Instead, they sought outside opinion about what the mass was and what to do about it. A few weeks later, they told her about it. “Sometimes unusual things show up on these scans” she was told. This was incorrect: Nothing like this had happened before at UC Berkeley.
In a way, the story has a happy ending. The large mass turned out to be benign (but at the time of the experiment they had no way of knowing that). It was removed. A year and a half after the operation, there are no signs of reoccurrence.
The experimenters not only (a) withheld what might have been life-saving information, (b) they persisted in this behavior after having time to think about it; and (c) they threatened someone who wanted to do the right thing. This is no momentary lapse in judgment. The experimenters — including the professor in charge and who knows what other powerful people at UC Berkeley — actively did the wrong thing. They carefully decided not to tell her info that might have saved her life.
More. After I wrote this post, I learned that the person in charge of the Wheeler Brain Imaging Center at the time was Professor Mark D’Esposito. By email I asked him if he disputed any of the facts in this post and if the Center had done anything to keep such a thing from happening again. He didn’t reply.
When I have done those experiments in the past, the grad students running it have offered to give them the MRI’s for free. They’d do anything to get people to just show up.
Privacy rules have proliferated so much in recent years that I expect many institutions have developed a culture of not releasing any information to anyone, ever, common sense or humanity be damned. In this case, there may be some mindless spillover from experiment protocols that obsess over double-blindness. Not that that there’s a logical case for it – compare it to the reporter’s reflex to scatter “alleged” throughout any crime story, even where the risk of libel is laughably absent: e.g., “The alleged assassin felled the long-time dictator with one shot to head.”
Needless to say, the experimenters’ behaviour was inexcusable.
Why not tell us the experimenters’ names?
btw, for a funny post on salt (and the sodium lack most people have):
https://www.t-nation.com/article/most_recent/sodium_your_secret_weapon
A friend of mine participated in an MRI experiment at Minnesota about a dozen years ago. When the researchers saw his scan, which showed a large tumor, they IMMEDIATELY referred him to a neurologist. His tumor also proved benign although it was large enough to be quite threatening (despite having up till then produced no symptoms he’d noticed).. There has been no recurrence. Happy ending. I find it really shocking that researchers would withhold information like that from a volunteer about their scan.
Thanks, Emily, that’s good to know.