Philip Alcabes discusses myths of health, disease and risk.

Fear and Flu

Kudos to Revere, for two enlightening posts on flu — which bear on an important issue in the health realm today.

Last Tuesday, a post by Revere at Effect Measure highlighted the effect that cultural anxieties have on the production of scientific knowledge — specifically with regard to modes of contagion.   In the 1920s, a time of worry about immigrants and socialists, public health “concentrate[d] on society’s most marginal people, in keeping with the Zeitgeist.”  Thus Typhoid Mary, and other concerns about germ carriers.  By contrast, when the environment is of most concern, people worry about transmission via objects — fomites in our odd epidemiology jargon (from Latin fomes:  touchwood or tinder).  There are reminders to wash hands after touching the subway handholds, not to handle other kids’ toys, to think about doorknobs.

On Thursday, “Swine flu this fall:  turbulence ahead” took the time to work through the results of mathematical modeling — a highly readable post which explains why some modeling results suggest a rationale for the belief that swine flu might spread intensely in the northern hemisphere this fall.  Revere does the favor of reminding the reader that models are not always good predictors of what will happen.

History shows that the metaphors that guide scientists’ focus in tracking contagion aren’t always perfectly either/or.   They don’t alternate neatly between people-directed or environment-directed, that is — more typically, many myths and metaphors compete for attention, with certain ones winning out at any given moment.  Now, the alleged toxicity of the environment seems very compelling to some people, and there are also contagion concepts based on fears of foreigners, suspicions of supposedy nefarious corporations, worries about open borders, anxieties about public education, concerns that governments keep secrets, and so forth.

The guiding metaphors for contagion breathe life into moral, political, or profit-making campaigns.  The magic-bullet concept remains compelling, for instance, and perhaps accounts for some of the interest not only in Tamiflu but in whether or not flu strains are resistant to it, and whether or not it will be made available,  to whom, and at what cost.  There’s a post at H5N1 on this today.

But there’s an overarching truth about swine flu:  our society can’t seem to leave it alone.  No matter how small the tally of confirmed H1N1 flu deaths (WHO counted 1154 as of the end of July, the European Centre for Disease Prevention and Control‘s report today puts the number of deaths at 1645 — but even the higher number yields an exceptionally low case-fatality ratio:  under 0.1%, roughly on the order of seasonal flu.  So this remains a far-reaching but so-far mild outbreak.

Yet the question of whether or not it will become more severe — more virulent, more deadly — remains front and center for public health people, and stays alive as a media story.

Okay, yes, it’s important to be prepared.  It would be shameful if there were deaths that would have been preventable with a little forethought and planning.

That accounts for the assiduous tracking by serious public-health people.  But what accounts for the prominence of this rather mild outbreak in the public consciousness?

This is an era of epidemics.  Which is to say, it is an era of fear.  There must be something wrong, it is so easy to think.  This is not just the work of media (although they help, and it doesn’t hurt that playing on fear sells).  It runs deeper than that.  Our modern civilization seems, sometimes, deeply uncomfortable with the world we’ve created.

Last Thursday, for instance, the  New York Times ran a story featuring a study that claimed TV viewing is linked to blood pressure increases in kids.  It’s a story of toxicity in the constructed environment — of the ways contemporary arrangements are inherently and latently harmful (yes, latently:  TV isn’t causing kids to shoot other kids, at least not in this story; it is allegedly causing them to develop a so-called risk factor for later harm).

How do we keep an eye on flu, or other outbreaks, and seek ways to protect everyone from harm as best we can, but avoid hysteria about contaminated toys, subway riding, TV viewing, processed foods, and so forth?  This is a challenge.  It means examining what makes us anxious, and it means understanding that life has risks that can’t be avoided.

Bodies Using Bodies

Larissa MacFarquhar’s article on kidney donation in the July 27th New Yorker reminds us that our society remains uncomfortable about the satisfying of bodily needs by making use of other people’s bodies.

This is a good discomfort, no?  Nobody should blithely take advantage of another person, coercing him into donating his organs or making use of her for sexual pleasure without consent.  Watching Stephen Frears’s 2002 film Dirty Pretty Things leaves you appalled and angry at the kidneys-for-passports trade, as it must.  Slavery is an outrage and an offense, a rejection of the values that make ours a civilized society.   Every thinking person decries the trafficking of women for sex.   In modern society, it feels wrong when one person’s body is used to  advantage another’s body.

The exchange of money in the process seems to change the moral valences without exactly alleviating the discomfort.  That children’s families are paid for their manual labor in processing cocoa for the chocolate we eat doesn’t make the practice of child forced labor seem less heinous.  Maybe we even boycott chocolate manufacturers who use chocolate from Ivory Coast, where child labor is involved.  Taking advantage of children’s bodies disturbs us (even to the point of limiting our chocolate purchases).

Money registers differently when it comes to adult sexual exchange.  In the usual American view, there is a bright line between sexual enjoyment obtained through the use or threat of force, and the same enjoyment procured by payment but without force.   Both forcible rape and prostitution are illegal, but most people would recognize a distinct difference between the moral repugnance elicited by rape and the tinge of moral corruption carried by sexual advantage obtained by payment.

Payment introduces a legal twist to sex, too:  the law holds the man who procured sexual advantage through force to be culpable in the act of rape.  Yet, when it comes to paid sex, the legal code holds the woman who provided the sexual service accountable.  The bluenose might scorn both the sex worker and her client equally, but the law makes a distinction.

By contrast, payment makes all the difference when it comes to the use of someone else’s body for productive manual labor.  Your neighbors would be repelled if you were to use force to make a passer-by reshingle the roof of your house, and might have you arrested.  But they aren’t bothered when you hire a roofer.  Most aren’t very bothered when the roofer has some immigrant laborers do the scut work for below-minimum wage — which seems someplace in between a true fee-for-service contract (you in need of a new roof, a roofer able to build one) and slavery.  When money changes hands, it softens the moral impact of making use of someone else’s body.

But the moral flavor doesn’t disappear.  If your roofer refused to let his immigrant workers come down off the roof during a lightning storm, his meager payments to his workers would feel less important than his endangering their welfare.   In other words, onlookers would still be moved by the moral flavor involved in making use of someone else’s body.

Now for the tricky part. What about the use of others’ bodies for medical research? An article in today’s Times laments the shortage of willing bodies for testing cancer treatments.  Contemporary medical ethics presupposes a human trait called “autonomy” and requires that researchers respect this characteristic – for instance by refusing to experiment on a person unless she has signed a consent form acknowledging that she agrees to be experimented on and asserting that she understands the risks and rewards involved.

Of course, the reward system is often obscure, no matter how verbose the researchers are in the process of obtaining consent – in part because it’s often hard to predict who will benefit if new treatments are deemed to be effective, in part because it’s often hard to know how effective a treatment is likely to be, and in part because a big chunk of the benefit accrues to the researchers (articles published, grants funded, awards won) and the research industry (grant funding justified, administrative costs rationalized).

Nobody would accept a system in which people are forced to become medical research subjects.  In fact, the discoveries at Nuremberg about forced participation in medical experiments during the Second World War gave the impetus to the modern field of medical ethics.

But how much does it change the moral outlook if you are rewarded for allowing your body to be used by medical researchers with a cash payment?  The researcher has to be able to claim that her  subjects are not forced to participate – and the medical ethicists who are attached to the autonomy concept will still worry that the subject’s decision to lend his body for research will be coerced, not free and autonomous, if the payment is too grand.

For some classes of people, including children and addicts, payment is deemed to be especially coercive.  The thinking being that if the researcher were to offer $100  to an addict, the addict would use it to buy dope, and that would be harmful, and therefore the researcher would be doing a bad thing even though her research was really meant to do good.   Physician researchers always need to feel that they’re doing a favor to society (not to themselves).

Meanwhile, others decry payments that are too small, arguing that time, angst, and (sometimes) physical or mental suffering involved in being a research subject ought to be reimbursed at respectable rates.   Although the idea of a professional workforce of permanent research subjects, who might receive a retainer in return for surrendering their bodies and tissues for research, rubs physician researchers the wrong way.

Our society really likes medical research. We don’t want our doctors to stop looking for ways to help us to live longer and more comfortably.   Bodies must be used, but they shouldn’t be used without consent, they shouldn’t be purchased outright (that would be slavery), they can’t be paid too much, they shouldn’t be paid nothing, they shouldn’t be recruited for research use in perpetuity or receive the sort of ancillary benefits of employment that professionals get, and they should preferably not be “vulnerable” (young, developmentally disabled, imprisoned, or pregnant).

Which brings us back to kidney donation.  Should kidneys only be allocated anonymously and through a universal system that provides kidneys in accord with a complex algorithm that takes account of the likely benefit of the transplant?  Should there be a federally controlled market in kidneys, or at least some system that encourages donors through market-value incentives (like tax breaks), as Sally Satel has advocated?  Should there be a fully open market through which you could purchase the organ you need from a suitable and willing donor?

The conjunction of bodies-in-service-to-other-bodies and dollars makes the kidney question — like sex work, child labor, and medical research — fraught with moral meanings.  Simple solutions won’t serve.