Philip Alcabes discusses myths of health, disease and risk.

A Must-Read Book

I urge you to stop what you’re doing and read Rebecca Skloot‘s The Immortal Life of Henrietta Lacks (Crown, 2010).   It’s a rare combination: clear reporting on how medical science works, insightful consideration of deep moral issues about the uses of human tissue for the advancement of knowledge, and a moving, often troubling, family narrative.

Henrietta Lacks died of cervical cancer in the “colored” ward at Johns Hopkins Hospital, in 1951.  From samples of her cervical tissue, the immortal cell line called HeLa was developed (by Dr. George Gey, at Hopkins).  Skloot’s story covers the family’s travails before and since, but also digs deep into the problem of race in the business of American medicine.  Her account challenges, or should move us to challenge, the smug certainties about our supposedly post-racial society, and the convenient formulae about “informed consent” and “access to care.” I guess I should say, The Immortal Life should make us ask just what “care” means in today’s system.

Henrietta Lacks and her family members were almost never taken seriously as humans with real problems.  First, they were poor and uneducated black people from tobacco country relocated to Baltimore; then, they were the bearers of the same genes as a woman (Henrietta) who had died of a remarkably aggressive, and therefore medically interesting, cancer; later, they were background and local color to the story of the origin of the thriving, and therefore scientifically interesting, HeLa cell line.

To Skloot’s credit, she’s taken to heart, and acted on, the problem:  she founded the Henrietta Lacks Foundation to help raise funds for education and medical expenses for Henrietta Lacks’s family.  Skloot’s blog, Culture Dish, carries updates about some of the achievements of the foundation and sometimes takes up issues germane to the book, especially regarding personal rights to genetic information (here, for instance).

It’s also impressive that Skloot interweaves in her narrative (and takes up more fully and explicitly in an Afterword) the vexing question of ownership of tissue samples.  She highlights how the expanding capacity to extract information from genetic sequencing ups the ante on the questions of privacy of tissue samples — since it’s now possible to ascertain potentially identifying information from genetic sequences even in a sample from which the usual verbal identifiers (name, address, and so forth) have been removed.  And she asks how the profits potentially available from exploitation of new discoveries should be shared.

The intersection of these problems with the matter of race makes The Immortal Life of Henrietta Lacks, like James Jones’s Bad Blood and Harriet Washington’s Medical Apartheid, a book that should be required reading for everyone involved in the health sector today.

By Philip Alcabes | August 20th, 2010 | Categories: Ethics, Health Professions, Myths, Narratives, Physicians, Uncategorized, books, science | Tags: , , , , , | No comments

Science, Race, and Silence

The coverage of the Feb. 12th shootings at the University of Alabama in Huntsville has been preoccupied, by and large, with the accused killer.   There are details about her background, the 1986 shooting of her brother, her training at Harvard, the 1993 investigation of a bomb mailed to a Harvard professor, her research, her publications, her tenure case at UAH, her husband.

And there has been new talk about the usual issues:  The  perpetual vexation about tenure.  The problem of safety on campuses.   The question, now customary, of whether a shooter’s  writing offers any clues to her or his psyche.

But there hasn’t been much discussion about the victims.  Two of the three who were killed, Maria Ragland Davis and Adriel D. Johnson, Sr., were African American professors.  All three of the deceased — the other, Prof. Gopi Podila, was department chair — were known for their support of students, according to obituaries published by the Chronicle of Higher Education.   This in itself is both laudable and rare enough, in a field increasingly driven by the quest for research grants, to deserve mention.  But the sudden death of two science professors who were themselves black Americans and who devoted themselves to educating black students in the sciences is a particularly profound loss to higher education.

That Dr. Ragland Davis was a black woman, one of the rarest of beings in the scientific professoriate, makes the loss particularly poignant.

Statistics are no solace, of course.  But the silence about the loss of two black American professors who died by gunfire is part of the greater, even more stunning, silence about the great many black Americans who die by gunfire every year.

In 2006, the last year for which complete data have been posted by the National Center for Health Statistics (see table 18), 30,896 Americans died by gunshot.  Almost half, 12,791, were murders.  That’s 35 firearm murders per day, on average.   About one every 40 minutes.

Black Americans are over twice as likely to die by gunshot than are white Americans (see table 19 at the link above).  The gunshot death rates are roughly 22 deaths per 100,000 per year and roughly 9 per 100,000 per year, respectively.  Those risks have been remarkably constant, even as deaths from Americans’ main form of deadly mishap, vehicle crashes, have declined.

This is not a plea for gun control.  Better gun control laws would allow a lot of people to live longer, and improve the public’s health — but we hear such pleas every time  a multiple shooting makes the news.  That’s not the point here.

The point is the problem of giving chances to people who haven’t had them.  Or, to put it more bluntly, the point is race.

In particular, the impossibility, still, of talking about how science should be done by people who have not historically been included in shaping it and defining it.  By people other than the ones who, at least until recently, made all the decisions about what’s worth studying and what’s worth changing.  By women, by black Americans, by people who grew up poor, by people who did not attend elite universities on the east coast or in California.

Universities — the elite ones and the many non-elite ones — are indispensable in the endeavor to change science, for all sorts of reasons.  Maybe the best reason is the presence of professors who support and encourage students who aren’t drawn from the usual class of people.

The deaths at UAH should be an occasion for great mourning, not only for professors who died doing their work, but for the project of changing science.  If the silence over the Huntsville victims were the silence of grief, it wouldn’t seem so bad.  But I think it’s the silence of not really caring, or of not wanting to face a shameful truth.  Compared to talking about the links among race, science, and education… well, it’s less taxing to wonder about the shooter’s unpublished novel.

By Philip Alcabes | February 24th, 2010 | Categories: News, Uncategorized, public health | Tags: , , , , | 6 comments

The Anti-Obesity Crusade Invades Academia

The Chronicle of Higher Education reports that students at Lincoln U. in Pennsylvania can now be required to take a physical exercise course (“Fitness for Life”) if they have a body-mass index above 30.  The chairman of the college’s Department of Health, Physical Education, and Recreation pointed out that he sees a responsibility to address the “obesity epidemic.”

Nutty, but not so terrible, perhaps.  The policy is a transparent attempt by a not-so-wealthy university to seem au courant and curry favor with donors, who might like the idea that the school is addressing obesity — which the public health industry keeps insisting is a terrible problem facing young people.

Really, the obese-student policy at Lincoln doesn’t demand much.  Some students have to work out for a few hours a week (it’s a 1-credit course).  Not how they want to spend their time, probably pointless in terms of their health, but not the end of the world.

But pay attention to the commentary.

The director of another university’s center on higher-education law and policy voices concern — not over Lincoln’s feeble gesture at controlling fatness , but over medical confidentiality.  “Being put in a class with other ‘at-risk’ BMI’s walks a little close to disclosure,” he told the Chronicle.

The implication here is that obesity is an illness, and therefore only a physician should be allowed to know that you have it.  Certainly, your classmates shouldn’t.

How can obesity, of all things, be thought of as a secret that would only be revealed if you got into gym shorts and showed up on the treadmill in the fat-students’ class?

There’s a clue in the use of the term “at risk”:  obesity is like sleeping around without using condoms, driving drunk, or smoking near your kids  — it’s supposed to be both dangerous and shameful.  You would only admit being “at risk” to your doctor (who would, we have to assume, dutifully dissuade you from following your naughty instincts).

At the NYT blog The Choice, Rebecca Ruiz notes that the Lincoln faculty will be discussing the problem tomorrow.  So far, there’s been plenty of skepticism there, but a few defenders of the fat-class policy.  And most of the comments responding to Ruiz have been supportive of the idea that a university might require physical exercise.

What isn’t getting mentioned is race.  Is the policy popular because Lincoln is one of only two HBCUs in Pennsylvania, and some of the much-discussed “adverse outcomes” of obesity are conditions that are common among African Americans?  Do people feel  relieved that a predominantly African-American university is addressing a problem that seems somehow racial?  Do we feel reassured that a college that  doesn’t serve America’s traditional wealthy elite is taking on a problem that seems to be a threat to the elite — and a threat that seems born of the bad habits of the poor, especially the dark-and-poor?

Obesity is more common among people who identify themselves as African Americans — even at colleges, as a recently published study showed.  Here, and worldwide, obesity is mostly a problem of poverty.

Doesn’t obesity’s taint stem, at least partly, from the way it reminds Americans of poor people — and the dark-skinned poor in particular?

By Philip Alcabes | December 3rd, 2009 | Categories: Behavior, Risk, epidemics, obesity, public health | Tags: , , , , , , | Comments Off

New Fronts in the War Against the Fat

We thought that American hysteria over obesity was nonpareil, but British anti-fat warriors seem to be giving the American crusaders a run for their money.

Back in April, a fast-food establishment in Leytonstone, in the northeastern part of London, was shut down as a public-health threat.  As Patrick Hayes explains at Spiked, a 2009 initiative of the local council, called the Sustainable Community Strategy, outlaws the establishment of new carry-outs within 400 meters of a school.

Supporting the rhetoric, Professor Kathy Pritchard-Jones, president of the European Society for Paediatric Oncology, stated in February that “If we don’t … tackl[e] how much exercise our young people take and how concerned they are about what they eat and their weight, we are going to have another explosion of cancers.”

Last week, the U.K.’s Environment Secretary, Hillary Benn, invoked the fight against obesity as rationale for increasing access to open spaces, asserting that “green spaces are good for us” – a pitch which moved Spike’s sharp-eyed Rob Lyons to note that “You can’t even go for a stroll these days without it being turned into a health initiative,” and to anticipate that “chubby people [will be] quick-marched around a south London park for 30 minutes on a regular basis to help them lose excess pounds.”

There are so many pieces to the fanfare over the “obesity threat” that it’s impossible to assign one cause for the commotion. For a long time, Junkfood Science has investigated the sociology of the “science” of obesity in detail, and has exploded many of the central myths of the anti-obesity movement – most importantly the apocrypha about fatness and mortality.

And Paul Campos’s brilliant book The Obesity Myth (Gotham, 2004) explains how a constellation of wealthy industries together support the lose-weight-now rhetoric.

Elizabeth Kolbert’s assessment of some new books on the topic in this week’s New Yorker embraces the tired rhetoric, assuming that fat is bad and asking why people eat so much.  To her credit, Kolbert takes the plunge into examining the new field of fat studies.  But she ends up disparaging fat studies for “effectively all[ying] itself with McDonald’s and the rest of the processed-food industry, while opposing the sorts of groups that advocate better school-lunch programs and more public parks.” Apparently, asking that fatness be examined in the context of both social structures and individual liberties strays too far from the central dogma of the anti-obesity crusade.  To which (pace Hillary Benn) public parks are balm and tasty fries are anathema.

But an often-neglected aspect of the anti-obesity panic is the overtone of class and the undertone of race. In Leytonstone, for instance, it turns out that the community has been troubled by the profusion of cheap eating establishments, especially in regard to the “anti-social behaviour” that it supposedly brings.

Yet, as Hayes notes at Spiked, it was a Jamaican establishment that was singled out for closure – while more echt-English outlets, like fish-and-chips shops, have been ignored.  The decision that behavior is anti-social being always in the eyes of the beholder – or the skin color of the beheld.

In most of the developed world, fatness is more common among the poor.  In the U.S., it is far more common among African Americans.  Obesity is a marker for being out of power.  To assert that you are against obesity is to state that you intend to identify with those who have power, and mean to keep it.  You can wag your finger at the misdemeanants who eat fast food and fail to exercise — without having to come out and say that what is really troubling you is that your people are starting to look like those people – like the poor, like the dark-complected … like the fat.

No wonder the anti-obesity rhetoric has heated up in Britain, and is catching on in Europe.  It’s a winning way to wage the war against the poor and unentitled, without having to seem arrogant or racist.

By Philip Alcabes | July 26th, 2009 | Categories: Behavior, Disease, Myths, Narratives, obesity, public health | Tags: , , , , | Comments Off

Public Health and Purity

A week ago, we rode by bus nearly the full length of the old land of Galicia, from L’viv in Ukraine to Kraków, Poland.  Our one long stop was at Belzec, where a moving memorial, the creation of historians and artists, speaks to a double disaster:  the murder of nearly half a million people, predominantly Jews, who were gassed there in 1942 and ’43; and the so-called purification of the region by virtually erasing part (the Jewish part) of a historically complex culture.

The visit spoke to a modern concern, too:  the connections between purity and public health.

The commandant at Belzec, Christian Wirth, had been one of the directors of the Nazi euthansia program, nicknamed T4.  Between 1939 and 1941, T4 killed over 70,000 Germans — mostly full-blooded “Aryans” — who had psychiatric or developmental problems, or congenital conditions, and who were therefore lebensunwerten, unworthy of life.

The T4 program, in its turn, grew out of the Nazi doctrine of racial hygiene — an effort to improve the public’s health by control of breeding.  Racial hygiene was based on eugenics, and led to public health endeavors such as screening for congenital conditions, mandatory sterilization of sexual transgressors and disease carriers, and selective breeding.  The Nazi public health program was much applauded by American public health experts, at least in its first few years.

Once the decision was made to eliminate Jews from Nazi-occupied regions, the experience that Wirth and colleagues acquired through killing the lebensunwerten in T4 was invaluable.  Going from exterminating tens of thousands of mentally ill or developmentally disabled people to eradicating a few million Jews, Gypsies, and other polluters of Aryan health was just a matter of making the process more efficient.

It’s striking how thin the line is between laudable public health goals, like limiting congenital disease through screening, and implementing the concept of race purity.

By Philip Alcabes | July 26th, 2009 | Categories: Disease, Myths, Uncategorized, public health | Tags: , , , | Comments Off