Category Archives: history

Henrietta Lacks’ grandkids: “How can you judge the 1950s by the ethics of today?”

When Rebecca Skloot walked into the Kimmel Cancer Center in Philadelphia last week to talk about The Immortal Life of Henrietta Lacks, she was riding a wave of positive reviews for the book she had been working on for nearly half her life. The Boston Globe had called it “a well-written, carefully researched, complex saga of medical research, bioethics, and race in America.” Salon termed it “a heroic work of cultural and medical journalism,” and the New York Times thought it “a thorny and provocative book about cancer, racism, scientific ethics and crippling poverty [that] floods over you like a narrative dam break.”

At the Kimmel Cancer Center (part of Thomas Jefferson University), the crowd was made up of scientists and physicians, many of whom knew Henrietta Lacks only as HeLa, for the cell line named after her unusual, fast-growing cells. Over the years, HeLa cells have been used for cancer research, to test the polio vaccine, unlock the secrets of DNA transcription, and thousands of other medical projects.

Among the crowd was Dr. Leonard Freedman, dean of research at Thomas Jefferson, whose lab invented a new tool for DNA research using HeLa. “You know, I used to do a lot of science with these cell lines,” Freedman said to this reporter just before the lecture. But the book was a revelation: “We knew the cells came from some woman, but we even had her name wrong. And we certainly didn’t know any of what’s in the book.”

Dr. Edith P. Mitchell.

The same was true for Dr. Edith P. Mitchell, a clinical professor of medicine and program leader in the school’s Gastrointestinal Oncology program (and a general with the Missouri National Guard. “My first exposure to HeLa cells occurred when I was a young student, and was told not to contaminate anything,” Mitchell explained, “because, and I quote, ‘Those HeLa cells will grow all over the place.’”

All of this, Mitchell added, made her eager to secure Skloot as the center’s lecturer for Black History Month. Some might find this a paradoxical choice, seeing Henrietta Lacks’s story as a prime example of the medical community’s injustices to African-Americans. (For more on this history, see Medical Apartheid by Harriet Washington, who helped advise Skloot on her book.) Mitchell had a different view: “What does all this have to do with Black History Month?” she asked the crowd. “I say it’s connected to our history—by which I mean,” she said, glancing pointedly at the mostly white faces, “the history of the human race.”

Skloot asked the audience of 200: “How many people in the room knew about Helen Lane, before today?” About 100 hands went up. “And how many have worked with HeLa cells?” Two dozen raised their hands.

Then Skloot began to trace the story of a young mother of five who came to a clinic at Johns Hopkins, in 1951 “the only hospital in Baltimore that would see black patients,” after discovering a lump on her cervix.

Back then, “informed consent” laws didn’t exist, she added. The only consent needed was the patient’s signature on a form granting Johns Hopkins permission “to perform any operative procedures that they may deem necessary in the surgical treatment of Henrietta Lacks.”

It was immediately clear that Lacks had a full-blown tumor. She was given the prescribed treatment of the time, a course of radiation. But her diagnostic lab sample soon took on a life of its own.

That specimen, Skloot explained, was sent somewhere having nothing to do with treatment: to cell biologist George Gey, inventor of the “roller drum” used in labs worldwide, who was in the process of gathering all the cervical-cancer cells he could find.

“Gey thought he could isolate cells that had characteristics that were only cancer,” said Skloot. “So he collected them, but until he got Henrietta’s, the cells just always died. Hers didn’t.”

In fact, they doubled every four hours. The manically reproducing cells behaved the same way in Lacks’s body: she died eight months after entering the clinic. But her cells now had their own rooms at Johns Hopkins, and Gey was beginning to publish the fact that he’d found and perfected the line he called HeLa. Soon every scientist wanted his own supply, and eventually facilities were built to mass-produce HeLa cells and ship them around the world.

“I first heard about the HeLa cells when I was 16, at community college taking a class for high school credit,” said Skloot. “My teacher said what all teachers said in those days: ‘There are these cells, there was this woman, her name was Henrietta Lacks, and she was black.’ And I was like, That’s it? That’s all we know? He told me to go find out some more and write an extra-credit paper about it,” she laughed. “About a year ago I sent him my manuscript for this book: ‘Hi, remember that paper I owe you?’”

It took Skloot nearly two years to gain the confidence of Henrietta’s daughter Deborah Lacks- Pullum, whose journey to understanding is the core of Skloot’s book.

“I was just the next in a line of white people who wanted something,” Skloot said, adding that she gained Lacks-Pullum’s trust only after she offered to include her on the quest, taking her on lab visits and field research. During the years that HeLa had become increasingly renowned—the first cells to go into space, the first whose genes were mapped—the family, back in Baltimore and Virginia, had been largely unaware that Henrietta’s cells had even survived.

Asked what the family thought of her book, Skloot said that “there was a lot of pain associated with the story to them, and there were certain parts they avoided—like accounts of her death. But I think it was also sort of cathartic.” Deborah Lacks-Pullum remained deeply traumatized for many years. After learning about the HeLa cells and the research it had facilitated, said Skloot, “she believed her mother’s soul was in these cells. She wondered, ‘How can my mother rest in peace, if you’re shooting her cells to the moon?’”

Graphic from WIRED Magazine shows the global reach of the HeLa cells.

Other members of the family were, and are, passionately angry. “Her brothers became very angry when they knew the cells were being bought and sold,” said Skloot. She pointed out that any researcher in the hall that day could go online and buy a vial of HeLa for about $250, with other HeLa-derived products costing up to $10,000. Meanwhile, many members of the Lacks family are without health insurance. “They keep saying, ‘If our mother is so important, why can’t I get access to health care?’”

Skloot cautioned that the facts don’t support the media hype that something illegal has been done. Over the decades, she said, stories about the Lackses ran like much of the negative coverage of her book: Woman’s cells stolen, millions made, family still poor. But there’s no evidence of actual theft in a country where consent laws were hazy, she said—only a built-in structural injustice toward people without power.

“George Gey has been held up for decades as this guy who stole her cells, maybe didn’t treat her right,” said Skloot. On the other hand, some scientists have objected to the fact that the book raises ethical issues at all. “One stood up and told me it was irresponsible to tell the story, that this is going to give people the idea that they own their cells.” But Skloot refuses to see the story in cut-and-dried terms. “This has been held up as another Tuskegee,” she said, referring to the notorious forty-year syphilis study that used sharecroppers as its subjects, “and it’s just not.”

According to Skloot, even Lacks’s grandchildren don’t think so. Most of them are in their thirties, she said, “the first generation to have much schooling—one granddaughter is finishing up a masters’ in psychology. And they look at this whole thing from a very different perspective from their parents, saying things like ‘You can’t judge the 1950s from the ethics of today.’ They’re very proud to have come from her.” When the family came up to New York for a book-signing like this one, she said, “the room sort of erupted in cheers. All the scientists were saying to them, ‘This is what I did with the cells, this is what’s important,’ and asking them for autographs.”

With Roland Pattillo of Morehouse College, Skloot has set up the Henrietta Lacks Foundation to benefit the Lacks family. She spoke of one scientist who pledged to donate to the foundation: “‘A dollar every time I process a batch of these cells,’ he said. So I got a dollar and a dollar, and then he realized, ‘Whoa, this is going to add up!’”

Another potential source of compensation for the Lackses is a movie or TV adaptation, which would require producers to purchase not only rights from Skloot but ‘life rights’ from the family. The book has already sparked quite a bit of interest from studios, she said. Like Henrietta Lacks’s immortal cells, her story—complex, controversial, and needing to be told—is likely to be with us for some time to come.

First posted at Women’s Voices For Change.

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Howard Zinn

One of the things that makes me personally sad about Zinn leaving us when he did is that I’d hoped, when Ain’t Marchin’ was published, to introduce him to Garett Reppenhagen (left), president of Veterans Green Jobs and former president of Iraq Veterans Against the War. The latter had told me, when I interviewed him two years ago, that Zinn’s People’s History had been a catalyst for him. “I walked into this cool bookstore in Colorado Springs,” Reppenhagen told me, “and I said I’m a high school dropout and probably going to Iraq. What do I need to know?” In addition to recommending John Perkin’s Confessions of an Economic Hit Man (also an excellent choice), the bookstore clerk insisted he buy the Zinn. A sniper who was at that moment stationed in Bosnia, it took some time, he said: but afterwards felt changed forever.

Now it turns out that Zinn wouldn’t have been surprised to hear that, since another young vet from the previous Iraq war, Jeff Paterson, also credits him. Jeff, the tireless and inhumanly tall coordinator of Courage to Resist, tells about discovering Zinn in Asia in 1989:

At the time, I was a 20-year-old Marine artillery controller becoming disillusioned with what I was seeing stationed in Okinawa, the Philippines, and Korea. Reading “People’s History” was certainly an unknowing step I took towards later refusing to fight in Iraq in August 1990. It enabled me to see my individual actions as a part of something much larger—yes, even larger than the Marine Corps.Within a matter of weeks in late 1990 and early 1991, nearly a hundred Soldiers, Marines, Airmen, and Sailors pledged to refuse to fight—most eventually did time in stockades and brigs. Twice as many service members publicly spoke out against the Gulf War at anti-war protests and rallies—sometimes to dozens, sometimes to 200,000 people. However, unless you were there, or have read a recent edition of “People’s History”, you wouldn’t know any of that ever happened.

Maybe the book will make a small contribution toward lifting that national amnesia, at least a little. Meanwhile, see Jeff below with Michael Wong, a former Army medic who deserted after he learned about My Lai, spent years in Canada and then worked in exactly my job in San Francisco. Watching them interact makes me feel a little unstuck in time.

(Cross-posted, of course, at I Ain’t Marching Anymore.)

Some news and a promise

I almost literally crawled under a rock toward the end of the year, in an effort to finally get this book completed. I can now report honestly that it’s almost there. (For a cheat sheet on its ultimate shape, check out my draft introduction at the book’s own site.)

Some  bits and pieces from around here – some more personal than usual:

  • With the book’s delivery in sight (promises, promises, I know, but….), I’m now blogging daily (ditto) at the Ain’t Marching site. Subscribe to its feed if you can so you don’t miss out. Today, for example, I comment on two medical-whistleblower stories, and on the intrepid reporters who’ve been crucial in exposing them.
  • Speaking of intrepid reporters, the unparalleled Jina Moore keeps breaking new ground, and rolling out new features from her work in Liberia (a project of the Pulitzer Center on Crisis Reporting).  Check it all out at her new site: this week she has a LONG, smart piece in the Christian Science Monitor Sunday mag, but I’m also intrigued by her older, sly piece on the guy who stole all the lawbooks, citing intellectual-property laws. (He needs some African Stephen James Joyce to give him a spanking.)
  • The web magazine I edit, Women’s Voices for Change, just gave me a taste of what it’s like to be in the magazine world: huge changes, a few layoffs, and a hot new editorial director who’s promised to make it famous. I’ll keep you posted as things proceed.
  • Meanwhile, I’m waiting to see if these folks find my work interesting enough to invite me in and give me hell for a few years. Maybe I won’t have to write more than two books that took Ph.D,-level work without that degree to show for it.

Matt Taibbi: “The entire economy was a fake”

The latest Rolling Stone piece from Matt Taibbi, our Tiresias of Wall Street, was horrifying enough for Halloween (as Susie Madrak points out),  with its latest details of how it all came down. It also gave the best summary I’ve seen of the whole Dantean reality created by it all.

Back when I was writing for Chelsea Now and trying, at the height of the bubble, to figure out how it all worked (and wondering whether I needed an MBA), my colleague Albert Amateau told me a story. I was getting headaches trying to sort out how it could all be legal that the air above your building, the years until you die, were all being “monetized” at such a rapid pace. A few years ago, said Al, he’d been offered a chance at a job writing for a newsletter entirely about derivatives, those malleable catalysts of much market hysteria. It didn’t work out, said Al, one of the best craftsmen in the business, but it told him that people like he and I had wasted our talents studying literature and poetry. It was people on Wall Street that had learned how to really make money with fiction.

Taibbi agrees:

If you squint hard enough, you can see that the derivative-driven economy of the past decade has always, in a way, been about counterfeiting. At their most basic level, innovations like the ones that triggered the global collapse — credit-default swaps and collateralized debt obligations — were employed for the primary purpose of synthesizing out of thin air those revenue flows that our dying industrial economy was no longer pumping into the financial bloodstream. The basic concept in almost every case was the same: replacing hard assets with complex formulas that, once unwound, would prove to be backed by promises and IOUs instead of real stuff. Credit-default swaps enabled banks to lend more money without having the cash to cover potential defaults; one type of CDO let Wall Street issue mortgage-backed bonds that were backed not by actual monthly mortgage payments made by real human beings, but by the wild promises of other irresponsible lenders. They even called the thing a synthetic CDO — a derivative contract filled with derivative contracts — and nobody laughed. The whole economy was a fake.

Oliver Stone got it right the first time, though many took his movie as a spur to enter the casino: I can’t wait to see what the new movie says.

Writing about war, frankly, is far more straightforward, with bodies you can see even though the good and bad guys are sometimes far more blurred.

Why I’ll be the First Amendment this Halloween

Illinois prosecutors must be getting really desperate. Their own governor has already declared a moratorium on executions, after all. Bur targeting journalism students is really beyond the pale.

First page of the Bill of Rights, the first of which is?

First page of the Bill of Rights, the first of which is?NYT via Raw Story: "Lawyers in the Cook County state’s attorney’s office say that in their quest for justice in the old case, they need every pertinent piece of information about the students’ three-year investigation into Anthony McKinney, who was convicted of fatally shooting a security guard in 1978. Mr. McKinney’s conviction is being reviewed by a judge.

Among the issues the prosecutors need to understand better, a spokeswoman said, is whether students believed they would receive better grades if witnesses they interviewed provided evidence to exonerate Mr. McKinney.”

RawStory adds:

The suggestion that students were encouraged to find evidence of wrongful prosecution even if there were none has raised alarms among some legal experts, who wonder whether Cook County prosecutors may be trying to discredit the project that has caused embarrassment for numerous prosecutors over the past decade.

“They’re either trying to undermine the investigation, or they’re trying to undermine the entire project,” Don Craven, executive director of the Illinois Press Association, told the press last week.

That settles my Halloween costume. I’m wearing tha judge’s robe I used to impersonate a dead Habeas Corpus last year: this year, it’ll be a bleeding First Amendment.

Yeah, I’d call it “loyal opposition”

leyte hospitalGuernica Magazine did, anyway. Go look — some of it may look familiar if you’ve been there before, but if you keep reading you might be surprised. (Left is one of the images they didn’t choose.)

And on my shiny new Ain’t Marching blog, I talk a little about letters it has already prompted from families of soldiers. I hope they’re not the last.

dreaming of the next e-book

This week’s announcement from Google got me dreaming again:

james-joyce-bloomsdayThe next stage of Google’s book strategy became clearer on Thursday when the company announced that it would begin offering electronic books to any device with a Web browser through a new online store, beginning in the first half of 2010.

Of course, I was dreaming about something for which I have no contract, but which has tantalized me ever since I started with Ain’t Marchin’s Facebook page. A bunch of perhaps hopeless what-ifs, considering all the triple copyright issues involved; I used Google’s Bloomsday image, above, both to honor the great artificer (who invented the mashup in some ways) and acknowledge the anti-creative efforts of his grandson.

None of which prevents me from engaging in  series of what-ifs. For example, what if:

  • each tight chapter offered an e-link to more extended documentation, and even longer scenes?
  • readers curious about, say, John Huston’s “Let There Be Light” got an actual clip of the film, and another click to find where they can secure the whole thing?
  • similarly, documentaries by Judith Ehrlich and Dave Zeiger cd be glimpsed and co-marketed?
  • ditto hundreds of pages of now-declassified FBI files on Medgar Evers or the Berrigans, or Ethan Allen Hitchcock’s mad alchemist works?

I know the book needs to stand alone, and provide a full picture and satisfying story. But it seems silly not to make use of this place in the information undertow, once quaintly named a simple highway.

What do you think?