"the hardest thing in this world is to live in it"
It’s about time I added a category for my field of study, eh?
By the by, did I ever actually mention that I’m blogging for the Women’s Bioethics Blog? Well, I am – you’ll find me posting under Douglas’s nickname for me, Buddhist Valkyrie, as that’s what my blogger account has been for years.
Posted over at the Women’s Bioethics Blog, a late night, insomnia-fueled post-election round-up of interesting, mostly pertaining to bioethics-y things, results. So, you know, the stuff that interests me, which probably explains why it took me nearly an hour to write it all. We won’t talk about the time I should have sunk into reading Heidegger that instead went into fact-checking that every Better Know a District congressional representative that appeared on The Colbert Report did indeed find themselves re-elected…
The University of Washington gets fully in to the privately funded stem cell research game, according to the alumni newsletter:
Orin Smith, retired Starbucks president and chief executive officer, has donated $5 million for the UW’s Institute for Stem Cell and Regenerative Medicine. Smith, a 1965 UW graduate, is chairman of the board for UW Medicine. UW Medicine also has received a $1 million anonymous gift for stem cell research.
Dr. Randall Moon, director of the institute, said that “stem cell research is key to the success of developing new therapies for many diseases and injuries, and Orin Smith’s wonderful and timely support of the institute is really a gift to the patients of today and of the future, who will benefit from these therapies.”
Progress, he said, in stem cell research and regenerative medicine has been “severely thwarted by federal policies” that state federal funding can only be used for research on certain lines of embryonic stem cells and on adult stem cells. UW scientists have said the existing lines of stem cells eventually will wear out. And adult stem cells, they have said, do not hold the promise that embryonic cells do.
These policies have put “us way behind where we would have been” had researchers been allowed to use new lines of embryonic stem cells for their research, Smith said. If U.S. researchers can’t move forward with stem cell research, then scientists in other countries will, he said.
This is one of those issues where I agree, 100%, with the press coming out of AJOB: if the US doesn’t do it, someone else will, and if we want any say in how the technology is being used, we’ve got to get in there and create the technology to begin with. This is just another in a growing example of universities looking outside the federal government in order to do just that.
My body is pretty persuasive when it decides I need to take a day off – something I haven’t had since before going off to Denver. It does this neat trick where my right arm will basically stop working, and any sudden or swift movement will send giant spasms through the right side of my torso – yay chronic pain. Thank god I have a pain management appointment in two weeks.
Anyhow! After sulking for a bit, I decided I’d spend the day cuddling with the cats and relaxing (since, you know, I was given little choice in the matter), and watching TV. My choice at midnight was either a FoodTV show about diners and greasy spoons (attractive, actually, in the hopes I could find something like the Crocodile around here), or a show on Discovery Health called “The Man Who Slept for 19 Years.” I asked Michael if I wanted to watch the latter, knowing ahead of time it would probably piss me off, and he asked why I’d want my blood pressure to get too low. A good point.
And hey, it only took 4 minutes to piss me off! The mother of Terry Wallis, who started speaking after 19 years in a minimally conscious state, said that the doctors gave up on her son after a few weeks, but she’d never ever give up on her son. She admittedly then made an amazing effort, for nearly two decades, of seeing her son three days a week in his nursing home, and bringing him home every weekend. On top of that, they simply treated him as if he was there, talking to him, taking him out to dinner and the movies, hunting. I think anyone involved in care of patients in these minimally conscious states, be it from accident, injury or nature of birth, will tell you that interaction is so, so important.
But insinuating that someone has given up on someone, and the moral connotations of that, because they are in a persistent vegetative state, or brain dead? That’s a level of insensitivity you would hope someone who had been in a similar situation to the people she’s making those comments about would not make!
Now granted, the medical establishment bears more than a little of the blame here – in Wallis’s case, they declares him PVS, and refused to take a look at him again when his family felt he was starting to change and trying to communicate. If they had, they would have realized the misdiagnosis before he started talking again, and likely would have gotten more significant care that would have accelerated his healing/progress. The New Scientist article I linked to notes that there is no broad-scale system in place for re-evaluating patients after the 8-week post-injury mark, which seems…like a bad idea. Largely because such policies do make these cases happen, which is bad in that I’m sure Wallis would be doing better if he had gotten more aggressive care, but also because it affects other patients and their families.
Why do you think families are so disinclined to believe the bad news of brain death, or PVS, or even coma and minimally conscious? There are just enough “miracles”, that is, medical screwups with positive results, that make it to the news every year that people want to bank on being one of those miracle misdiagnoses with a happy ending. Why not? It happens to other people, why not them?
Now, to give this show its fair due, even though I’ve yelled at the television several times in the last half hour (and will probably continue doing so the next), they’re portraying the case as the family heard it from the doctors, and moving forward from there. They’re also not making this a Hollywood story. He has no ability to make short term memory (his frontal lobe is completely atrophied), he still thinks it’s 1984, he doesn’t recognize his daughter, he believes he is fully able-bodied (he has very little physical mobility), has little to no impulse or behaviour control, and they’re not sugar-coating this. But since it is television, they’re also showing people who’ve been in shorter term, accident-based comas who’ve made full recovery, and I can see people who are watching this recreationally with little to no medical background conflating the two experiences and again, misapplying it to personal experience.
I don’t know why I watch these shows – low blood pressure is good for a soul. (Okay, fine, I do know why I watch them: I want to see what information is being broadcast to the general public. I do believe that people do a lot of their learning subconsciously, via what they see on television, be it an episode of ER, daytime talk shows, or so-called “educational” television like the Discovery network of channels. It’s an insidious sort of learning that sneaks below our critical thought horizon, popping back up months or years later sans context of where we found the data, to be applied to the situation in front of us. Since the knowledge is just there, we assume we learned and retained it and thus it passed a critical examination to be remembered, and must be valid – creating an awful lot of known false information. We see it in the CSI and ER effects and beyond. So, I think it’s worth keeping an eye on – so long as you do so with critical function engaged!)
The Discovery tagline is “The merging of man and machine: science fiction or science fact? Witness the birth of a new species!” I figure, okay, this should be interesting (and regret not knowing about it in time to tell Summer or Linda about it, since I suspect they might have found it interesting, given the recent fMRI debate at AMBI).
Being me, I’m thinking a lot about notions of consent and experimentation on people (with lots of breaks to stop and squeal and try to photograph the raccoons on my patio – what can I say, I’m easily distracted by cute). In the first cyborg study this show is talking about, they realize that a man is not in a coma, but locked inside a completely paralized body. They hook electrodes into his brain, and he slowly learns to communicate via cursor and keyboard that he controls with his brain (something we’ve all heard of at this point). And of course, our immediate reaction is that this is fabulous; none of us can contemplate the horror of being locked inside a paralized body and think “oh, that’s for me!” So freeing someone, even in a limited manner that a cursor across a keyboard would allow, seems like a good idea. But I have to wonder about the idea of experimenting on the very vulnerable: on the one hand, who else do we experiment on for technology like this? But on the other hand, this is a small population of people and families who’re desperate for anything that will help, and will say yes to anything on the hope and prayer that it will make the situation better. They’re exceedingly vulnerable, and it seems like it would be easy to take advantage of that to pursue science. What kind of precautions and committees are in place to make sure that this taking advantage isn’t happening?
Well, no – even beyond that. Can you set up a committee or an IRB that can make sure there isn’t a taking advantage of going on? I’m not sure that’s possible. It might simply be in the nature of the research that, if it is to happen, it will involve taking advantage of the vulnerable.
One of the next stories covered on this show is about a man whose spine was severred in a fight; Cyberkinetics did a 12 month study with their “Braingate” technology – implanting electrodes into a subjects brain, with basically a socket that you could plug a computer into. They wanted to spend a year trying to get Matthew to use a cursor to control a screen, television remote, computer, and etc – and within three days he managed to do so. They would plug the computer in and he described feeling free, being able to do things for himself, from reading and answering email to watching TV and channel flipping without needing someone else around to help.
While the above concerns about vulnerability are still in play, Matthew at least was not fully locked in his body and could consent. He did, the experiment happens – and a year later, it ends, and they remove the electrodes and ability to plug in to the computer, despite thet fact that it was a resounding success and he gained a lot of freedom. Why it was removed wasn’t specified, but my guess is that was part of the FDA-approved trial guidelines. And we, or at least I, have to wonder if this is right? Can we, should we, give someone this ability, which must be wonderful, and then take it away saying “sorry, we know it worked wonders for you, but we can’t let you keep it”? This seems wrong, to offer a treatment, to give hope, and then say “sorry, terribly sorry, but…” Regardless of what you say at the outset of the trial, regardless of whether or not you tell them upfront that the technology will need to be removed, knowing something at the abstract level versus how you feel about it after a year of the experience is going to be different. How do you give someone an enhanced quality of life, and then justify taking it away? I don’t think you can.
One of my favourite things to hear was a doctor talking about augmentation, saying that a top tennis player will tell you that the racket has become an extension of their arm – it is part of them, and so far as the brain is concerned, it simply is their arm. This dovetails beautifully with posthuman theory, and of course leaves me wistful for CHID, and sitting around discussing the cyborg. A few pokes around Google, and I found a couple of interesting links:
Cybofree – Cyborgs, Fantasy, Reality, Ethics and Education
Human Genetic Enhancements: A Transhumanist Perspective
…and discovered that Dante coined the term “transhumanize” in The Divine Comedy way back in the late 1200s. Neat, eh? Now granted, how we use the term transhuman today doesn’t precisely map onto Dante’s terminology; he was certainly thinking much more in a philosophical sense while we use it to almost singularly refer to the cyborg and the posthuman, changes to the actual flesh, but I think we could borrow from contemporary phenomenology and argue that to change the body is to change the philosophy. And besides, the bottom line is the same: something greater than the normative human condition.