Today's NYT offers another another such thread between the global university and the neoliberal iteration of what we used to call the prison-industrial complex (PIC,) the use of prisoners as test subjects for pharmaceutical products often created and patented by university researchers. Is this the newest frontier in the post-Bayh-Dole restructuring of the university's priorities? Is this where all that NIH money goes?
Even with current regulations, oversight of such research has been difficult. InHow does the academic labor movement respond to and intervene in this linkage?
2000, several universities were reprimanded for using federal money and
conducting several hundred projects on prisoners without fully reporting the
projects to the appropriate authorities.
The current guidelines for prisoner research are interesting (I had to take a quiz on them as part of a traiting at work last week, just before the story in the Times)--in effect, there's a much stricter standard for research involving prisoners than for that which involves almost any other adults. Which is probably as it should be, given the obvious history of and potential for abuse.
ReplyDeleteWhere I think it gets fuzzier, though, is in the case of clinical trials for life-threatening (or seriously quality-of-life impairing) diseases. Someone interviewed in the article suggests that the normal informed consent standard--which includes, among other things, the condition that a patient's care will not be adversely affected should he or she decline to participate in a clinical trial--doesn't apply for a population that often doesn't have access to the generally-accepted standard of care. Which seems like a valid argument.
Still, it hardly seems ethical to deny prisoners the opportunity to opt into taking potentially life-saving experimental drugs--especially in oncology, participation in a clinical trial is often a patient's best hope for survival (even as it carries 'more than minimal' risk).
In short, I agree with quite a few of the people quoted in the article that there might be a legitimate case to be made for some revisions to the existing regulations.
My efforts to write out what I've been thinking about the pharma-uni-gov research complex (which, of course, I'm now part of) more generally don't seem to be going anywhere coherent tonight. More later, maybe.
While I may not be as directly implicated in the pharma-uni-gov research complex as you, I would argue that all of us who work for universities are "part of" it even if we work on shakespeare or strikes or punk porn instead of nucleic acids or radiology.
ReplyDeleteSecond, while i don't think anyone should be denied life saving treatments, my sense of the article is that that isn't what's been denied. Permanently scarring or mutating prisoners' bodies for the sake of acne cream is something different from participating in a trial of a new cancer treatment. The question of volition is a serious and complex one made increasingly difficult to satisfy by the precarity and unfree status of prison populations, and the use of prisons as testing grounds for publicly funded, privately owned research, seems, given the racialized logics and class politics of incarceration and criminality, deeply and irresolvably problematic.
and i guess i also think that the question of incarcerated folks having access to decent health care, let alone potentially life-saving trial cancer treatments, should be decoupled from the question of the entanglements of ivy league university's biology/immunology departments' entanglements with pharmaceutical companies and public or pirvate correctional facilities. We need universal health care, and until we abolish prisons, folks living in them need and deserve quality care as much as everyone else.
ReplyDeleteWhat i find disconcerting is the way in which the unfree population of imprisoned test subjects are exploited for private gain. That's independent of whether or not the regulations are loosened, i guess, and I don't yet know enough about the law to opine on e way or the other.
I don't think anyone's proposing a return to the pre-1973 procedure of using prisoners as a population for testing everything imaginable. I'm sure there are people working in pharmaceuticals development, in industry and at universities, who'd love to see that--but I don't think there's a danger that it will become the legal standard. In the meantime, prisoners cannot participate in clinical trials of drugs or devices that pose more than 'minimal risk,' which means that they are ineligible to receive potentially life-saving experimental therapies.
ReplyDeleteI'm concerned, though, about the details of funding and ownership and testing--and this concern, I think, comes from the fact that dealing with these questions (how do I write the inclusion criteria for eligible subjects for a new study? how fast can I hurry the protocol through the IRB? will the project end up with gov or foundation or pharma funding?) is how I'm earning my keep at the moment. It is--or at least, for me, it has been--a different experience than being in the humanities and knowing that patent revenues and pharma grants are part of what's funding the whole university enterprise.
Ultimately, yes, healthcare needs to be universal, all research needs to be publicly funded, and drugs and med devices shouldn't be subject to patents. But given that that's not the status quo, and that the categories of physician/researcher/funder/owner and patient/research subject can't be disentangled at the moment, there's a lot that's troubling.
Fair enough - i didn't realize that the calculus of risk was involed even in the casde of patients with terminal conditions. Goes to show how ignorant I am of the legal frameworks here.
ReplyDeleteBut I'm still unconvinced that the strategy for ensuring that prisoners get live-saving care shouldn't be to agitate for that directly rather than make folks unpaid test subjects for pharmaceutical products or medical procedures their families probably won't be able to afford.
I don't know. Clearly you're much closer to this stuff than I am..
There are at least three separate issues involving prisoners-as-patients that are coming up here. One is that of access to 'standard' best-practices medical care, which prisoners are legally entitled to (in fact, prisoners are the only people in the US with a legal guarantee of healthcare, although Medicare and the VA create a more-effective healthcare entitlement for other groups), but still often don't actually receive. This, of course, is a problem. A big one.
ReplyDeleteBut then, again, there's the fact that the standard treatment doesn't always work. I've been attending hematological oncology case conferences recently, and for a lot of the 'interesting' cases that are being presented in conference, the recommended course of treatment is to try to get the patient into a clinical trial. As I wrote before, depriving prisoners of access to these trials doesn't make much sense to me.
Question number three, then, is whether prisoners are in a position to give informed consent to participate in clinical trials that pose more than minimum risk, and where the potential benefit is significant but probably not life-saving. This, I think, is the real gray area here. It's also where the argument *against* paying prisoners (or other participants in clinical trials) comes into play--the idea is that patients' interests are most likely to be protected when they can weigh the potential risks and benefits of experimental treatment
without having a financial incentive to participate in the (potentially dangerous) trial. You can disagree with this reasoning, but the policy makers aren't aiming for exploitation.
(And I'm still trying to work out some more general comments about the tension between a commitment to providing the best care possible to the individual patients and the knowledge that providing this care involves reinforcing the structures of research and development and testing and patenting new products and procedures that's, in a lot of ways, highly detrimental in a collective sense. But more on that later.)
the thing that i find most fascinatingly unsettling about the NYtimes article and various responses to it is the outrage at it. in the sense that it causes me to wonder where this supposed moral compass lies. for i am perplexed why, if it is okay to lock people in cages, and subject them to the most violent atmosphere in the U.S., then why is this testing somehow over the line? it would strike me that incarceration alone, let alone the existance and propogation of special housing units should also be included in any conceptualization of the torture within U.S. prisons. to this end, the proposed testing should hardly be viewed as an aberration, but rather as an extension of the current state of torture within the U.S. prison regime. as George Jackson said: "capture, imprisonment is the closest thing to being dead that one is likely to experience in this life."
ReplyDelete