A Cell Donation Day That Will Live in Infamy–Part I

Henrietta Lacks was young, poor, unassuming, African-American. From Virginia, she earned her living as a tobacco farmer, happily married, had five children, and died of cervical cancer at 31.

But her story doesn’t end there. In pain and bleeding as the cancer took its toll, she was tested for syphilis and treated for venereal disease–but certainly failed to receive state of the art cancer treatment.

Her illness’ progression may have been complicated by having exactly one treatment location: In 1951, Johns Hopkins was the only hospital nearby that treated black patients. The cancer had metastasized–there was little to be done, and Ms. Lacks died in the hospital.

She was buried without a tombstone in the family cemetery, and to this day the exact location of her burial site is not known.

But, dead as she was as an early age, her body lost to the generations, Henrietta Lacks actually has a form of immortality more pervasive than anyone could have imagined.

Before she died–and without asking or even telling her–doctors took some of her tumor cells for research.

And Ms. Lacks, who, in life, was a solid, decent human being, but not extraordinary, gave to scientists something they’d been longing for, but had never been able to find–cells that could be kept alive and grown in the lab. Named HeLa cells (code for Henrietta Lacks, they were the first line of cells not to die off in the lab. This wonder cells would be shared with countless researchers throughout the years.

Keeping the cells alive was complicated procedure, to be sure, with the makings of a horror movie. Michael Gold, in his 1986 book A Conspiracy of Cells shares the requisite cellular diet (and you know I couldn’t make this up):

1. Blood from a human placenta [I didn’t ask whose]
2. Ground-up remains of a three-week-old unborn cattle embryo [for real]–and. . .
3. Fresh chicken plasma from the blood of a live chicken heart

I don’t know the chef that concocted this diet plan–but success made up for how grotesque it was.  The cells flourished beyond all expectation or hope.

These  cells lived and grew–and went on to become the first successful human cell line–ever. And they grew and grew–until there were trillions upon trillions of them. They seem to have played a role in almost every important cellular experiment for decades after their ‘birth’ in the lab.

Salk used them to research his Polio vaccine, they have been used to help develop medicines to fight cancer, the flu, and Parkinson’s disease, and have been part of the research developing gene mapping and cloning. Ms. Lacks’ cells were there, testing the effects of atomic radiation–and (and I’m not sure why on this one; my research lags behind here) they were sent into outer space.

A few posthumous honors have been granted the woman who unknowingly changed the face of medical research forever. In 1996 the state of Georgia and the mayor or Atlanta recognized Ms. Lacks for her posthumous contributions to medicine research. Just this past year Morgan State university granted her a posthumous honorary degree. And in the fall of 2013 a new school specializing in bioscience will open in Vancouver, Washington, named the Henrietta Lacks Health and Bioscience High School. Thanks. A lot.

But as the cell-explosion continued, and lab after lab worked on Ms. Lacks’ cells, no one bothered to tell the Lacks family about their wife and mother’s contribution. No one in Lacks’ family ever knew any of this for more than 20 years. When they were finally told in the 1970s, they were stunned, then angry. “That’s the main thing that’s troubl[ing],” they said. “Why was it kept such a secret?”

Companies that sold HeLa cells made billions, while the Lacks family remained poor–and numbers of them don’t even have health insurance.

To this day, no apologies were ever made, and no recompense has ever been offered to Ms. Lacks’ family.

But the story doesn’t end there.

HeLa grows so fast, and is so viable–and was shared so generously–that it shows up in all sorts of places that it shouldn’t. Researcher after researcher believed himself to be studying one form of cancer, only to find out–really quite late–that he was analyzing a certain hardy strain of cervical cancer cells. The phenomenon has ruined hundreds of research studies–and wasted millions of dollars..

Almost as if Ms. Lacks seeks posthumous revenge for the invasion of her cellular line, there is now a controversy throughout the medical research community, raising the question: Exactly how many labs and strains have HeLa cells contaminated–and how can the labs ever clean up from the massive contamination by the cervical cancer cells fed on placenta blood and embryo?

Let’s examine the havoc wreaked by HeLa in the next post.


Why DO The Texts Keep Getting Bigger?: DSM’s Tendency to Pathologize the Normal

Each subsequent publication of the DSM has gotten progressively larger. We can only imagine what sort of tote bag we’ll need for the upcoming DSM-5.

Now, this doesn’t bother me for its own sake, really. I don’t go on family vacations with the latest volume of the DSM along for light reading.

What concerns me is that the texts grow in conjunction with increased pathologizing of what used to be ‘normal’ (take that as you will) behaviors.

Curious how the DSM-5 will come to win at the weighing-in ceremony?

Of course the committee got itself an addition by incorporating bereavement into depression; has several new and improved mental illnesses in the pipework, assumedly adding to the pagination count; would seem to have been able to offset these page gains by cutting out one-half of the personality disorders–but needs to account for them elsewhere somehow, so there may be no net gain at all weight-wise; is still fiddling around with how to best plan for diagnosis of illnesses on the autistic spectrum, and the explanation alone for who on the spectrum goes to which part of the diagnostic coding might add some thoroughly confusing numbers. In short, I’ve no doubt the DSM-5 will win when it comes to sheer volume.

Allan Horwitz, Ph.D., is Dean for the Social and Behavioral Sciences, School of Arts and Sciences, Rutgers University, and Chair of the Mental Health Section of the American Sociological Association and of the Psychiatric Sociology Section of the Society for the Study of Social Problems.  He has written extensively on mental illness and its interaction with society–and has contributed via his articles to several different permutations of the DSM.

Dr. Horwitz, however, is unhappy. He doesn’t specifically kvetch about the increase in girth of the texts, but his piece alludes to how the uncontrolled growth  came about. I thank h-madness, a blog about the history of psychiatry, for providing access to Dr. Horwitz’s piece “DSM-V: Getting Closer to Pathologizing Everyone?”

It’s not long, and worth reading in its entirety, but just to pre-digest for you, in case you’re a world-class skimmer, as I can be:

Horwitz has several concerns about the process of compiling the manual, but focuses on the “three changes,  in particular, [that] could lead to an enormous pathologization of non-disordered conditions.”

Of course he addresses the removing the bereavement exclusion, which, as above, will fold bereavement into an Axis I disorder.

Concern 2 is more complex, but has profound implications for adding folks to the ranks of the mentally ill. The DSM-5 proposes adapting “dimensional assessments” for the existing diagnoses.

Up to this point, in using the DSM, to receive a diagnosis, the patient had to have, say, four out of 8 of the symptoms. That meant–and I wasn’t even that great at math, but I can follow–that if the patient had 3 of the symptoms, they did not have that disorder.  But what if the new DSM could create in approach in which the patient with 4 symptoms didn’t have that particular diagnosis, but rather some sub-version of it, thus having his own sub-disorder disorder? Horwitz is unimpressed by that possibility: “The current proposal to dimensionalize  measures of frequently occurring disorders threatens to  pathologize even mildly distressing conditions.” Seems he’d be a ‘3-strikes and your out’ kind of guy when it comes to diagnostic cutoffs.

And, finally, Horwitz is concerned about the new creation of “at-risk” categories for mental disorder.  This applies to people who have, say, just one symptom of a disorder–but whom the new text would encourage viewing as “at-risk” for a full-blown illness.

But, notes Horwitz, this “at-risk” allowance lets treaters diagnose people who are almost completely umsymptomatic as if they were in the early stages of an illness. There is no strong research indicating that someone who has one symptom of, say, bipolar disorder, is clearly in the early stages of the illness. Statistics seem to indicate that such a person has as good a chance of not becoming bipolar as of indeed developing the disease. It’s not a proposal he can buy into easily, without some serious limitations put on it.

He finishes his piece on what I can only call a down-note regarding the upcoming DSM-5 and its usefulness:

“The major proposals in the DSM-V . . . could wind up making psychiatry’s central  problem of distinguishing pathology from normality even more difficult  to resolve.”

And, hey, if we need more room for normality to become pathology–all bets are on that the DSM-5 will be bigger–although scarcely better, it unfortunately seems–than its forerunners.

Better start clearing a new place in my bookshelves now.