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.

Mitochondrial Dysfunction: Biologizing Autistic Behavior

Marx famously opined that social phenomena — world-historic events, he called them — occur first as tragedy, then as farce.  That was in 1852.

Today, it would be closer to the truth to say that tragedy only counts if it can be diagnosed.   And diagnosis only counts if it’s biological.

That’s been the story of  the conversation about autistic children, and the implication of so-called mitochondrial dysfunction.

Deficiencies of energy metabolism have been rumored in association with the autistic picture for a while now, and emerged in the Hannah Poling case a few years ago.  They were given a boost by a small European case series (abstract here, PDF here) published in 2005 in Developmental Medicine and Child Neurology.  (The authors of the article gave their paper the deceptive title “Mitochondrial dysfunction in autism spectrum disorders:  a population-based study,” even though the research involved no population at all, just 11 kids.  But business is business.)

Another boost came this week with the publication in JAMA of a methodologically careful study of  energy metabolism in 10 California children diagnosed with autism, contrasted with 10 children drawn from a well-matched sample of comparable control children.   The new study found reduced oxidative activity in mitochondria — the tiny energy-chain entities inside cells that produce chemically based, biologically derived power for the cells’ functions.  The reduced oxidative activity was present in most of the 10 autistic children, and they showed a much-altered mean energy metabolism on several different measures.

Thus, altered energy metabolism at the cellular level has been documented in a small handful of children diagnosed with autism.  It seems not to be present in all children with autistic diagnoses.  It might be a result of autistic behavior rather than a cause, or a bystander phenomenon of some kind.  Or it might be a feature that hastens diagnosis (in the ones who have the unusual metabolic pattern, it has not been shown to precede the diagnosis) without actually playing any predisposing role.  Indeed, the authors of the JAMA paper remark that the

mitochondrial dysfunction observed in this preliminary study performed with children presenting with full syndrome autism may or may not indicate an etiological role.

But this minor and still untested finding on mitochondrial energetics, still not of any self-evident significance regarding the cause of autistic behavior, has created a major stir.  Medscape weighed in.  Business Week ran a story written by HealthDay reporter Jenifer Goodwin.  And it’s no surprise that the story has been front page news at the autism blogs, like Age of Autism and Autism Speaks.

So it seems safe to say that we’re looking at the third coming of a fact.

That some children engage with the world differently than do most kids was the first discovery, an old discovery (some think the 18th-century Wild Child of Aveyron was autistic).  It was codified in 1910 when  the psychiatrist Eugen Bleuler labeled one of the varieties of childhood schizophrenia “autistic.”  Identification.

Next came diagnosis – beginning with Hans Asperger in 1938 and Leo Kanner in 1943.   In the grip of modernity, slow acquisition of words, quirky communication, fixity of focus, failure to multitask, preoccupation with parts rather than wholes, and so on, are no longer signs of diabolical possession, thankfully.  But neither do they signal a broadened sense of what human experience is like.  They’re just signs of disease.

Diagnosis has allowed all sorts of theories to summon support:  about parenting, about the toxic environment, about thimerosal in vaccines, or about immunization itself.  Autism is the diagnosis that lets people express their misgivings about modernity.

Now we’re seeing the beginning of step 3:  biologization.

If autism is to stand up to 21st-century modernity, it has to have a biological basis.  Otherwise it will go the way of the obsolete disorders of old, like neurasthenia, hysteria, or frigidity.  The research on mitochondrial dysfunction in California won’t be the last or the only big-dollar expenditure aimed at finding a biochemical basis for the diagnosis of autism.   And there’ll be DNA studies, too.

The sad thing is that the only good way for troubled parents to get services for their children is to have the kids diagnosed, and to help to get them labeled as biologically off-kilter (Autism Speaks was one of the sponsors of the study just published in JAMA).  Get them labeled as dysfunctional, to use the term of art.

There’s no percentage in betting on need, or social disadvantage, or just plain poverty as an impetus to free up funds and services.  The need doesn’t count if there’s no dysfunction.   Your event doesn’t count as world-historic without a biological basis now.  First as tragedy, then as diagnosis, then as biology…

Autism, ADHD, obesity, addiction — each time our society is confronted with a problem it can’t solve or an irritation it can’t salve, we feed the problem into the medical establishment’s diagnosis mill.  Then we turn it over to the biologists to put some science on it.

Once the problem has a name and a diagnosis and a biological mishap to it — then we can see it.

Public Health: Childhood is a Dangerous Place

Is there a Department of Scare Creation at Case Western?  This week, we have research reported by their Dr. Scott Frank and colleagues: “Hyper-texting and Hyper-networking Pose New Health Risks for Teens.”  Frank says,

The startling results of this study suggest that when left unchecked texting and other widely popular methods of staying connected can have dangerous health effects on teenagers.

(Aside to Dr. Frank:  C’mon, doc.  Do you not know that “hyper text” is already a term in wide usage? Do you know how sometimes there are underlined words, most often in blue, that, if you click on them with your mouse then you are magically transported to another website?  That’s it.  Do you realize that any teens who aren’t already laughing at you for your transparently hysterical research agenda have cause to snicker over your misuse of contemporary language?  But back to my point…)

The subject of a press release by the American Public Health Association, the study claims that teens who text  more than 120 times a day are, compared to light texters:

  • 41% more likely to have used illicit drugs
  • Nearly 3.5 times more likely to have had sex
  • 90% more likely to report having had four or more sexual partners

The results were based on a survey of over 4,000 high school students in the midwest.

The paper, presented at the annual meeting of the APHA, is yet another indicator of the association’s redirection — from promoting social reform to becoming the Popular Front for the Promotion of Family Values.   The news media complied with the APHA’s mongering by publicizing Frank et al.’s findings, for instance here, and so did the usually serious WebMD.

Research like this is meant to say both “childhood is deadly” and “children are dangerous.”  Teenagers have sex, it says, and you grownups shouldn’t take that lightly.

The connection of teen sex and teen drug use to cell phones, iPhones, or the Internet appeals to people who think there is something new, and terrifying, about modernity.  As Carl Phillips notes over at ep-ology, it’s a way of saying “Beware the scary new technology!  It is causing teens to interact.”

Of course, there’s also a race, class, and sex angle:  The study reported that excessive texting (along with what the authors call “hyper-networking,” meaning excessive use of social network sites) is more common among girls, racial minorities, and kids whose parents have less education. One more reason to be suspicious of the poor and the dark-of-skin, says the Popular Front.

Especially, the APHA wants us to beware of girls.  The public health industry — the folks who reminded your grandparents that female sexual desire spreads disease with posters like this one, from the ’40s:

US Government VD Poster, ca. 1940

Source: U. of Minnesota, Social Welfare History Archives

… now tell us to watch out for girls who text.

Mike Stobbe at AP, covering the report, did a (typically) good job of looking deeper into the question.  About half of kids between the ages of 8 and 18 text each day, and the ones who do average 118 texts per day. While texting while driving is a really bad idea, texting about sex isn’t uncommon (Stobbe points out).  Unlike texting while driving, nobody dies from it.

Public heath shouldn’t be a matter of, as the Frank report put it, wake-up calls for parents.   Childhood really is dangerous in some places (Somalia, Congo, and Haiti come to mind, in case physician-researchers currently obsessed with sex amongst American teenagers are looking for something useful to do with their medical skills).  But it isn’t in America.   Sex, even between teenagers, really isn’t very scary.   There are a lot of things we adults could do to make the country and the world less miserable, but spying on our kids isn’t among them.

Why Vaccinate Children Against Flu?

Scientists shill for vaccine manufacturers in doing routine research.  This week, HealthDay reports that University of Rochester researchers found lower flu-immunization coverage in states with less Medicaid coverage for vaccination.   Instead of asking whether pediatric flu immunization has any public health value, research like this assumes that flu immunization is useful.  It helps make sure the vaccine manufacturers sell more flu vaccine.

What is the value of mass immunization of children against flu?

CDC claims that flu is dangerous for children and recommends immunization.  This claim seems to be based on the 50 to 150 pediatric deaths attributed to flu each year.  Preventing children’s deaths is a good reason to immunize those who might get very sick were they to be exposed to influenza.

But to translate a small number of possibly preventable deaths into a national policy of mass immunization?  That takes a special relationship with the vaccine manufacturers (see here and here and here and here for my comments on the collusion of officials with pharmaceutical interests).

The evidence that flu vaccine is effective in children is shaky, as Dr. Tom Jefferson’s exhaustive scrutiny of study data reveals.  Immunization of children seems to be weakly effective at reducing influenza-like illnesses in a general population, as Ritzwoller et al. showed in a study published in Pediatrics in 2005.  Partial immunization was ineffective — an issue worth considering if more than a single dose is required.

A few studies suggest that mass immunization of children is a way to prevent flu among young adults.

A community trial of immunization of children against flu, published in Vaccine in 2005, showed the ineffectiveness of immunizing children:  there was no reduction in acute respiratory illnesses among children in the concurrent or subsequent flu seasons, compared to communities where kids were not immunized.  There were slight reductions in ARI incidences among adults in the community where children were immunized — but this study wasn’t designed to show whether it was the immunizing of kids that protected the adults, or something else.

Similarly, a 2000 study published in JAMA by Hurwitz et al. showed that flu immunization of children in day care had the effect of reducing acute febrile illnesses among household contacts, compared to household contacts of daycare attenders who were not immunized (abstract here, full article requires subscription).  So immunizing children in daycare might help their parents to avoid getting sick.

In general, there’s suggestive evidence that mass immunization of small children against flu lessens the impact of flu outbreaks among young adults.

But few young adults die of flu.  It’s an annoying and sometimes serious illness.  The reason the public health authorities are interested in preventing flu among young adults isn’t to reduce suffering; it’s to keep them from staying out of work.  Should we immunize children so that the nation’s economic machine doesn’t slow down?

To put it a little differently:  should we shift large amounts of taxpayer money into the hands of pharmaceutical and vaccine manufacturers for the purchase of flu vaccine for children, basically in order to spare employers the loss in profits that would arise when workers stay home?

The news from ProPublica this week, that they and associated journalists found many cases of physicians taking money from big pharmaceutical companies, is alarming but comes as no surprise.  ProPublica’s new searchable database shows that the seven pharmaceutical companies (collectively accounting for 36% of market share) that provided data together made $257.8 million in payments to physicians.

What’s more alarming is that pharmaceutical companies often don’t even have to bother paying to push their products.  That’s especially true when the product is a vaccine.  Even flu vaccine, despite its limited and highly variable effectiveness.  Policy decisions made by the Advisory Committee on Immunization Practices and CDC, practice decisions by medical organizations, research-grant funding, and so on are thoroughly organized around immunization.  Despite the evidence.

A Blog Worth Following

If you haven’t already, put Crawford Kilian’s H5N1 blog on your regular reading list.  There, while you’ll still get updates on the H5N1 avian flu virus and occasional pieces on H1N1 flu (and you can see a multitude of archived posts from 2009  filled with international material on the progress of last year’s flu — and the reaction to it), you now get a much-expanded scope, including news and commentary on the spread of infectious diseases of different sorts.

What I value about H5N1 is the tracking of the mosquito-borne viral diseases, like dengue and chikungunya as well as H1N1, that reveal the effects of the elision of ecosystem boundaries; the close attention to outbreaks that stem from changes in human-animal interactions — like the recent outbreak of plague in Tibet and, of course, H5N1; and the watch it keeps on the vaccine trade, as in yesterday’s post picking up a report in The Nation on the purchase of flu vaccine from France and one last week on a US tech company’s trials of a new flu vaccine (which won’t help the public but is, apparently, already helping the company to get richer).

The kind of close attention to the details of complex interactions amongst humans, animals, and both the natural environment and the economic one that H5N1 shows is indispensable.   It should spur more interest in wresting public health away from the simple-minded mass-vaccination schemes of medical officials in the U.S. and other wealthy countries — the point of which is usually to transfer public monies into the hands of pharmaceutical companies.  And move us to toward a more complex and inclusive view of the nature of health.