Stuffed and Starved; The Body Hunters

[sanguinity]

...So. Far. Behind. Also, these numbers are annoyingly all out of order. What I'm calling "book 18" I finished yesterday; what I'm calling "book 19" I finished in October. Ergh.

18. Raj Patel, Stuffed and Starved: The Hidden Battle for the World's Food System.

Wide-ranging, engaging analysis (from a systems perspective!) of the global markets in food, their control by a relatively small number of corporate giants, and the effect of that control on both farmers and eaters. Little explosions of connections kept going off in my brain while I was reading: Oh, so THAT explains that! I found myself wishing it was not a library copy so that I might highlight to my heart's content (and I am not normally one who reads with a highlighter in hand).

Patel's main objective is for farmers and eaters reclaiming local "food sovereignty" -- farmers having access to their own local markets, and farmers and eaters being able to determine their local food and farming policies. He also spends a fair amount of time on systemic constraints and illusory choice: farmers and consumers being required to choose from a diminished range of possibilities, and their selections being triumphantly bandied by propagandists as "free choice."

I especially appreciated his highlighting of activist farming organizations, such as Via Campesina and Brazil's Landless Workers' Movement, and I found his acknowledgment of the limited usefulness of activism via consumerism refreshing. (He's not against consumers trying to make better choices -- he buys fair-trade coffee and chocolate, after all -- but he's also quite clear that corporate entities are reasonably effective at co-opting such attempts. Due to agribusiness lobbying, "organic" no longer signifies ecological farming practices, and until farmers have more say on fair-trade certification boards, "fair-trade" is only a way to "help farmers who are already hanging on by their fingernails to hang on a little bit longer.") Patel also explicitly discusses issues of class, sex, race, and colonialism as they intersect with food justice, which I very much appreciated.

Which isn't to say that Stuffed and Starved is at all dry and heavy, because it is not. Patel works in Monty Python references and lots of gossippy factoids about the genesis of TV Brand dinners or why the British National Grid pays so much attention to major television events.

I strongly recommend this book to anyone who's interested in Michael Pollan's work, or in issues of obesity, starvation, free trade, and other issues of food justice. Patel also maintains a related website -- stuffedandstarved.org -- with updated news, educational articles, resources, and action items.


19. Sonia Shah, The Body Hunters: How the Drug Industry Tests Its Products on the World's Poorest Patients.

Also very good. I've delayed reviewing so long because I wanted to a decent summary of the content, but that was not happening. A few of the principle points, however:

• Drug testing is categorically not medical treatment. It is experimentation.
  
  
• Drug trials are most likely to yield interpretable results if the experimenters can find a population with 1) a high incidence of the disease in question, who 2) has never been treated for the disease, and who 3) is not being treated for anything else during the length of the trial. That is, populations poor enough to be without access to health care are very desirable to companies conducting drug trials.
  
  
• There are at least two ethical standards concerning experimental subjects: one is local and relativistic (the experimental subjects should be no worse off from participating in the experiment than they would have been had they declined to participate) or absolute and global (poor or otherwise low-power subjects should not be treated worse than subjects with more money or power).
  
  
• The absolute standard makes it very difficult to conduct some kinds of experimentation. For example, new treatments for an already-treatable disease can ethically only be tested to see if they are more effective than existing treatments; they cannot ethically be tested to see if they are more effective than a placebo.
  
  
• The relativistic standard has been used to endorse what many perceive to be clear ethical abuses, such as infecting institutionalized, mentally-retarded children with hepatitis under the justification that the conditions at the institutition were bad enough that the children would likely have eventually caught hepatitis anyway. That is, the "local" ethical standard permits experimenters to exploit existing social injustices. It also can and has led to situations where experimenters block others' attempts to rectify existing injustices.
  
  
• Studies on informed consent, which is often considered to be the last word in ethical debates, have shown that few people who sign consent forms can paraphrase what they consented to, or are even able to correctly distinguish whether they consented to medical treatment or a drug trial. This is true even when researchers and subjects share a language and nationality.
  

Against that theoretical background, Shah discusses:

• the history of global health inequities (many of which have been caused or deepened by protectionist intervention from the Global North, sometimes at the behest of pharmaceutical lobbies),
  
• the advent and erosion of U.S. regulation of the pharmaceutical industry,
  
• the ethical history of U.S.-based medical testing (including, during the Nuremburg trials, the perjurious ret-conning of U.S. ethics boards, after prosecutors had a difficult time delineating a qualitative difference between Nazi medical experimentation from U.S. medical experimentation),
  
• the adoption and erosion of international ethical codes on medical testing,
  
• and conflicts of interest within medical clinics, hospitals, the NIH, the WHO, and national governments.

In the end, Shah is not so much against pharmaceutical testing as she is against the hypocrisy and mythologizing that often surrounds pharmaceutical testing. When a company says that an experimental protocol should be permitted because it is "for society's benefit," will the society that bears the burden of the experimentation also be one of the societies that benefits from the resultant drug? Is the societal good available in the here-and-now, or is it available in "some speculative future when prices fall, or poverty ends"? Will the new knowledge actually benefit a society-at-large (e.g. a treatment for a previously untreatable disease) or does it benefit only corporate shareholders (e.g. a replacement drug for a soon-to-expire patent)? Do the designated ethical gatekeepers for medical experimentation have conflicts of interest? Unfortunately, as Shah documents, the pretty rhetoric about societal benefits often doesn't match the observed realities.

In her conclusion, Shah sums up with a discussion of the phrase "due to ethical concerns":

It's hard to imagine anyone talking about indentured labor, or oil spills, or corporate embezzlement as not being possible "due to ethical concerns." Those things are simply considered morally wrong and socially illegitimate, and are punishable by law. But when clinical researchers deceive patients, exploit their poverty, or divert scarce resources away from their care, it isn't considered an unalloyed bad. The main business of medical research -- improving health, saving lives -- overshadows it. The exploitation and human rights violations are just side effects.

We have two options, as Shah sees it. We could "mothball the mythology" that surrounds drug-testing, the mythology that frames the exploitation and human rights violations as "side-effects", and hold the drug industry to the same moral standards that we (try to) hold other self-serving industries to. Or we could demand that drug companies and medical researchers live up to the myths, and hold them accountable for actually doing the mythic work that they claim to do. The latter would require a political movement, Shah is well aware. In the meanwhile, she asserts, we need to find ways to do medical experimentation fairly.

Comments

[sophinisba]

I hadn't heard of Stuffed and Starved and it sounds like something I'd be really interested in. Thanks so much for the rec.

[sanguinity]

Oh, yay! I've been having a hard time not shoving this book at people, telling them that they want to read it, no really, they do. ;-)

[gigerisgod.livejournal.com]

i've read Michael Pollan, so i'm thinking Stuffed & Starved will be a great read. thanks for the recc.

[sanguinity]

Yay! Patel's scope is much larger than Pollan's, which I found satisfying. The U.S.-centrism in Pollan's analysis of meal production seemed a bit unlikely, somehow. That, and I wanted to understand how the U.S. food system interacted with food in the rest of the world.

[eccentricweft.livejournal.com]

The absolute standard makes it very difficult to conduct some kinds of experimentation. For example, new treatments for an already-treatable disease can ethically only be tested to see if they are more effective than existing treatments; they cannot ethically be tested to see if they are more effective than a placebo.

It seems like this is another element tempting drug companies to seek test subjects among populations that have no access to health care. If they want to test a placebo, but they can't do it with subjects who are already getting the existing treatment, use subjects who aren't getting any treatment at all.

There are at least two ethical standards concerning experimental subjects: one is local and relativistic (the experimental subjects should be no worse off from participating in the experiment than they would have been had they declined to participate)

I'm familiar with the relativistic standard from university research situations. The way it was explained in the training I had to take was that you can compensate people modestly for their time but it's not supposed to be enough money to influence them to participate in the research if they didn't want to otherwise. You can pay subjects in a 60-minute test enough to buy a latte, but not next month's rent.

And so I *cannot* wrap my head around how anyone could use that to justify infecting disabled minors who also can't give consent. Okay, I guess the argument is "this won't make you any sicker than you're probably going to get sick anyway." Which is - let me see - SICK. No, you know what? I think having someone push you down on purpose is a greater harm than just tripping by accident. Even if you don't know that that's why you fell.

[eccentricweft.livejournal.com]

Okay and I also did not mean that a society so screwed up that it allows children to be housed in conditions such that they're likely to get hepatitis is as morally neutral as randomly tripping on your shoelaces. It's horrific. It just seems to me that deliberately infecting them is even worse. Horrific-plus.

[sanguinity]

:: If they want to test a placebo, but they can't do it with subjects who are already getting the existing treatment, use subjects who aren't getting any treatment at all. ::

Absolutely. It's difficult to find subjects for HIV trials stateside, because the existing treatments already work pretty well. Who would give up an existing, effective treatment to roll the dice on an untried one? And what drug company wants to put their proposed drug up against a proven treatment, when they only need to show that they are better than a placebo?

Whether or not it's acceptable to do placebo-controlled out-of-country studies is another matter, though. International ethical standards have relaxed on that point during the past decade; prior to that, the Declaration of Helsinki (if I'm getting my various standards documents correct) appeared to prevent the use of placebos in out-of-country studies when a treatment existed in the originating country. Revisions in 2000 appeared to codify the permissibility of placebos out-of-country even when treatment existed in the originating country. Shah goes into the standards-shift in a fair amount of detail, and I don't want to make a mess of it here, but this is a matter of active debate, and a few whistleblowers' careers have been broken over it.


:: The way it was explained in the training I had to take was that you can compensate people modestly for their time but it's not supposed to be enough money to influence them to participate in the research if they didn't want to otherwise. ::

You might find interesting the section about financial bonuses to general practice M.D.s for encouraging their patients to enroll in medical studies. While large payments to subjects are proscribed, large payments to the medical providers of new subjects are apparently not.

:: And so I *cannot* wrap my head around... ::

I know! And yet you still find glowing articles about the lead researcher, Saul Krugman, and PubMed shows active debate in the medical literature about the ethics of the Willowbrook studies continuing at least into the mid 1980s. (If there is consensus on Willowbrook now, I don't know what it is.) So, apparently a number of people did think that study was ethically acceptable.

[sanguinity]

There's just been a settlement in one of the major cases Shah discussed. A glimpse into how not to conduct a drug trial.

[jacquez.livejournal.com]

thanks for posting these -- I'd just asked for nonfiction recs in the recs post; rydra_wong had rec'd Shah's book but I think Patel's sounds wonderful, too.

[sanguinity]

In the recs post you said something about liking Stiff, didn't you? You might try Pauline Chen's Final Exam. It doesn't have the absurd component that Roach's book has, but there may yet be things you like about it.

[oyceter]

Ooooo, these both look like books I'd be interested in, and I'm particularly looking forward to reading the first: I've wanted a discussion of food and environmentalism that also examines race and class and sex and colonization.

[sanguinity]

Colonization is central in Patel's analysis, with class being one of the big driving forces for colonialism, but also a central factor in food justice issues.

Sex and race are more incidental to Patel's analysis -- basically, Patel inserts notes that race or sex comes into play in this part of the discussion in a particular way. So race and sex aren't treated extensively, but he does give info that they do come into play, and (if you go into the endnotes) there are resources which expand upon that particular item.

[jcalanthe]

Thanks so much for these recs! Food is definitely one of my issues, and while I have some understanding of the issues outside the US, it's not nearly as deep as I'd like, and the first book sounds excellent for that. & the second is info that should be more widely discussed in the US, so it'll be good to deepen my understanding there too.