Reading this, I acknowledge that there's some measure of good that comes out of being able to advance our understanding of how the brain works.
At the same time, the whole enterprise, a failed surgery leading to a life spent as a guinea pig, strikes me as very sad. How many of these scientists secretly thanked the heavens that this guy lost out on a normal life so they could further their own work?
How was he able to give consent to all this research without the ability to form new memories?
I think we need to keep studying the world and pushing along our understanding of it, I just hope we never stop asking these sorts of questions along the way to keep ourselves human.
How was he able to give consent to all this research without the ability to form new memories?
The same way any mentally-incapacitated patient consents to treatment: They or the courts appoint a relative or a guardian to hold medical power-of-attorney, and that person as well as the patient must consent to treatment.
Meanwhile, I'm not about to defend the ethical standards of mid-20th-century brain surgeons, but I will point out that H.M.'s surgeon was hardly operating outside the norms of his time: H.M. had epilepsy, which is a pretty scary disease; understanding of the brain was really poor, and psychosurgery was all the rage. Far more awful things were done in the 1950s and earlier. If you ever want to experience the real-history equivalent of a vampire film, google up the wikipedia entry on Rosemary Kennedy (or, related: Walter Freeman and/or transorbital lobotomy). Warning: I had nightmares for a couple of weeks. Seriously.
In all ways except his memory, he was a healthy man of sound mind. I'm no expert on medical ethics, but I would argue that he was capable of informed consent. Remember that his working memory and other cognitive abilities were unaffected, which is part of the reason his case was so interesting.
Obviously, he would not be able to consent to the long-term study they performed on him. For a particular study, however, if you explained the situation to him he would be able to understand it.
And yes, by all accounts this was a case of people making the best of a bizarre situation. And I truly do hope that tangible good comes out this research if it has not already, beyond simply "we got a little smarter" which I find unsatisfying personally.
I truly do hope that tangible good comes out this research
No need to hope. I'm sure the H.M. case, once it became widely publicized among a new generation of doctors, did a lot to help discredit psychosurgery. Even without listening to your NPR piece (which I will not do :) I'm pretty sure that that's a good thing.
As Dr. Watts cut, Dr. Freeman put questions to Rosemary. For example, he asked her to recite the Lord's Prayer or sing "God Bless America" or count backwards. ... "We made an estimate on how far to cut based on how she responded." ... When she began to become incoherent, they stopped.
I can't upvote mechanical_fish enough because he's very right on both counts. And you're right to ask these questions.
Still, by all accounts he enjoyed the sessions. He had "some" degree of consent in that he could stop a session at any time. That's one critical part of informed consent regulations. The other is that you understand what you're doing and why you're doing it. Obviously he had trouble there and needed a legal representative to approve.
'How many of these scientists secretly thanked the heavens that this guy lost out on a normal life so they could further their own work?'
The Lord works in mysterious ways. Yes, from our limited human perspective, this is a very sad situation. But perhaps this was indeed a blessing from God to future generations?
This man will be known in honor for generations because of his (perhaps unwilling?) sacrifice!
At the same time, the whole enterprise, a failed surgery leading to a life spent as a guinea pig, strikes me as very sad. How many of these scientists secretly thanked the heavens that this guy lost out on a normal life so they could further their own work?
How was he able to give consent to all this research without the ability to form new memories?
I think we need to keep studying the world and pushing along our understanding of it, I just hope we never stop asking these sorts of questions along the way to keep ourselves human.