Philip Alcabes discusses myths of health, disease and risk.

NYC: Unethical Research by Bloomberg Administration

I had missed this story when the NY Daily News broke it in September, but  the front page of today’s NY Times made it impossible to ignore:  Mayor Mike Bloomberg’s administration is conducting unethical experimentation on human beings.

The News describes the experiment very simply:

[New York City’s] Department of Homeless Services split 400 struggling families into haves and have-nots.

The “haves” get rental assistance, job training and other services through a program called Homebase.

The other half … were dubbed the “control group” and shut out of Homebase for two years. Instead, they were handed a list of 11 agencies and told to hunt for help on their own.

The aim of the experiment, allegedly, is to find out whether Homebase, a $23 million program, is effective.  The city’s Commissioner of Homeless Services told the Times that

When you’re making decisions about millions of dollars and thousands of people’s lives, you have to do this on data, and that is what this is about.

(If you thought that what it’s about, for a commissioner meant to deal with homelessness, is making sure that people have homes — you were so wrong.  Silly you.)

To make matters worse: what’s being tested is a program whose effectiveness the city has already asserted. As Mike, who blogs brilliantly on this and many related topics at SLO Homeless, notes:  the 2010 Mayor’s Management Report, issued in September, claimed that Homebase helped “ninety percent of clients in all populations receiving prevention services to stay in their communities and avoid shelter entry.”

So, to make sure this is clear:  New York City is deliberately denying a couple of hundred families access to an existing homelessness-prevention program that it has already declared to be highly effective.

The scenario is identical to one that kicked up storms of controversy in the medical-research world in the 1990s (neatly contextualized and summarized here):   experiments were conducted in Africa and southeast Asia supposedly to test the effectiveness  of an already-proven preventive regimen, AZT.  Administered during pregnancy, it reduced the likelihood of mother-to-fetus or mother-to-infant transmission of HIV.  In the poor-country experiments, half of the women enrolled got the effective regimen; the other half got placebo.

In other words, if you were pregnant and infected with HIV and you had had the wisdom to live in the U.S., you got a treatment that protected your infant from infection.  If you lived in a poor country you got:  studied.

There’s something about poor people, and especially about poor women with kids, that seems to make them smell like catnip to the always evidence-hungry technocrat cats.

Want to run a placebo-controlled trial?  Find something that already works (antiretrovirals, homelessness prevention, or, in other circumstances, syphilis treatment, TB prevention, etc.), then find a few women with kids who need it — then tell them you’ll flip a coin.  Heads, they get what they need; tails… well, too bad.

I’m a scientist.  I believe that evidence can be helpful.  Sometimes, it’s crucial.  When you’re truly unsure whether to pick prevention A or prevention B, data can help you to choose right and avoid harm.  That’s the great promise of science.

But sometimes the appeal to evidence is baleful — like here in Bloomberg’s New York, where evidence on homelessness is just a way of furthering the aims of the technocracy.  Which always means that some people will avoid harm.  Others will pay the price.

And the others are, so often, poor women with children.

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This entry was posted on Thursday, December 9th, 2010 at 3:35 pm and is filed under Ethics, News. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed.

4 Responses to “NYC: Unethical Research by Bloomberg Administration”

Hi, Phil. Interesting story. I am inclined to bring up a couple of questions/nuances:

It seems to me that there are two equally plausible crimes here. One is what you cite, that some people are being assigned to a known-inferior resource just to confirm what we already know. But the other is that the already-known part is government propaganda and they are lying about there being good evidence that “homebase” works measurably better than (let’s assume cheaper) alternatives. You probably know more than you wrote, but from what you wrote the latter seems just as likely as the former.

As for tests on poor populations, I agree that it is distasteful and can be unethical. But what about a situation where, due to cost or whatever, no one in a group of people is going to get the believed-better intervention. Where is the harm in giving it to some of them to learn a little more and provide some benefit for some people. (That is, of course, different from actively dissuading/preventing people from getting the better treatment that they could otherwise get.) I know that some of the legalistic types in “bioethics” pose objections, but I do not think they have much ground to stand on — certainly not on consequentialist grounds, and not much on rights/libertarian grounds, and duty ethics can get awfully impractical. After all, many trials include an intervention that is strongly believed to be better than the alternative, but the costs justify the benefits and a group of “bioethicists” provide cover by pretending that the real justification is not simply “the costs justify the benefits”, and that is in a population where everyone could have the apparently better intervention, but learning more is worthwhile.

    Philip Alcabes says:

    Thanks for the comments, Carl. No inside info on Homebase, though. I’m not surprised that 90% of families really do avoid homelessness, since they’re not homeless when they enter Homebase; the Mayor’s Report could have been completely truthful on that score. The bigger concern isn’t with the proper way to gather information on how to provide services (you and I and others all agree that information is useful). It’s this: the city denies services that in a civic-duty sense it is supposed to provide and is capable of providing, and then exalts this failure by saying it’s “research.” Science shouldn’t be a cover for official misfeasance.

Steve Gorelick says:

There used to be a talk radio host in LA who, on hearing a jarringly perceptive sentence, would say that he was going to laminate it for his wallet. This one goes in my wallet:

There’s something about poor people, and especially about poor women with kids, that seems to make them smell like catnip to the always evidence-hungry technocrat cats.”

In the political world I learned that conscious intent is often not even operating when, navigating some political thicket, a bureaucrat discovers and takes the path of least (or less) resistance. And while they are usually smart enough to cloth that path or policy in benevolence and empiribabble, what is usually at work is pretty simple. They’ve found an individual or group that can be safely messed with; a group with which they risk minimal political retaliation.

What’s extra scary in this case is that the vulnerable group is not only being stigmatized or ridiculed. They are being cast in what you might call “the theatre of the empirical, “a performance of empiricism that is anything but.

Sometimes the “theatre of the empirical” makes the “theatre of the absurd” look positively rational!

Great book title:

Performing the Empirical: The Dramatic Structure of Proof in the Public Sphere.

    Philip Alcabes says:

    Thanks, Steve. Great point, that some people can be safely messed with. It’s politics-as-usual in the garb of science.