Bonie Blodgett: The immortal life of George Gey

These are cancer cells. There are many like them, but assume these are yours. If someone were to use them -- say, for research to cure a disease -- should you be compensated?

By BONNIE BLODGETT

August 21, 2010 at 10:10PM
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Cancer cells (Star Tribune/The Minnesota Star Tribune)

A physics professor at the University of Wisconsin-Madison mentioned to me a few weeks ago that the school's faculty and students were asked to read a book over the summer: "The Immortal Life of Henrietta Lacks."

If they complete the assignment, they won't be alone.

The professor explained that this huge and much discussed best-seller tells the "astonishing" tale of a poor black woman whose cancer cells revolutionized medical science but whose family continues to live in poverty decades later.

He hadn't read the book. No need; he got the point. "This country is so profoundly racist," he said, "it makes you wonder if things will ever change."

The injustice of it all is summarized on the book's dust jacket: "They took her cells without asking." Lacks, a cancer patient, did sign a permission form back in 1951, but author Rebecca Skloot believes she was incapable of comprehending it.

The verdict is inescapable. What Johns Hopkins cell researcher Dr. George Gey did to Lacks in 1951 -- it was he who took her cancer cells for research "without asking" -- was tantamount to theft.

But was it?

SKLOOT SEEDS HER BOOK with qualifications that undermine that conclusion. This is no Tuskegee, she cautions, but only after describing the horrific medical experiments conducted on African-Americans there -- along with those performed on Jews during the Holocaust. And yet Gey was an equal-opportunity cell burglar, helping himself to the cells of patients of every color and background.And far from being indifferent to cancer patients' suffering, Gey and his colleagues labored to ease Lacks's pain, which was monstrous because her cancer was monstrous. Its virulence was the very thing that made what came to be called the HeLa cells so willing, even eager, to grow in a petri dish.

Gey's actual crime, it seems, had to do with money. He violated not only Lacks' privacy, but the arguably more sacred principle of ownership. Skloot suggests that Henrietta's descendants should, by virtue of her contribution to science, receive free medical care plus a cut of the proceeds from every treatment whose development involved the HeLa cell line. Those include, most famously, the polio vaccine.

In hindsight, such an argument has appeal. The lack of legal protection for the cells was not racially motivated, however. Anyone of any race whose cells performed the miracle Henrietta's did would have been treated the same way.

And if we are going to set a new precedent to prevent a similar incident in the future, how exactly would the law be written? Would cells of all kinds suddenly be regarded as someone's property? And if cells, then why not kidneys, livers, eyeballs? Many people now freely donate their organs after death. Society has taken pains to prevent the creation of an organ market that would inevitably put poor people at the end of the line.

Moreover, cells are not like organs. An organ carries more of a personal stamp. In fact, cells can lose all personal stamp, by being genetically reengineered. That is how scientists hope to one day eliminate organ rejection in transplant patients.

Johns Hopkins was not bound, morally or legally, to agree to a payment when Gey took the cells. But did it err in not compensating the family once the value of the cells became clear? The answer hinges on how you define that word "ownership."

A cell is "mine" because it carries my DNA. Beyond that, a cell is a cell, impersonal as a spark plug. Stem cells are transferable from person to person and can be genetically engineered to change their function. My olfactory stem cells, for instance, might some day be used to repair your brain cells damaged by cancer or Parkinson's.

Long-term goals like these are why George Gey was so elated when he became the first researcher to coax a cell to divide and multiply in the lab. He dreamed of harnessing cells' adaptability to cure cancer.

• • •

AS SCIENCE IS MOVING in the promising direction of making cells interchangeable parts, should society's legal system be moving the other way? As a rule, scientists steer clear of thorny discussions like this. After all, what does the average Joe know about cell tissue? Better to dole out mild mea culpas and promises of a more enlightened approach in the future than to open up for public debate such hopelessly complex matters as patient rights, patents and privacy. The latter is a key legal issue that Lacks' family has raised in its condemnation of Johns Hopkins. Did the circulation of Henrietta's cells long after her death constitute an invasion of privacy?

When Hopkins' CEO spoke to the National Press Club in June, he failed to even mention the Lacks affair. Instead he recounted the medical center's long service to the poor. What else could he have done? Plenty, in my view.

He could have pointed out that if the HeLa cells were the legal property of the Lacks family, then any cells used in stem cell experiments would be off-limits until proper consent and payment had been secured. And if cells, why not kidneys and eyeballs? Why not include such items in our wills like so many table lamps?

What's more, giving people ownership rights to their cells would only strengthen the prolife argument that cells themselves have "rights" -- specifically, the right to grow into a fetus and then a human being.

The Hopkins CEO could also have mentioned that most medical research is paid for by taxpayers. Should Joe and Jane taxpayer share in the profits ultimately earned from those investments?

The answer, of course, is that as a taxpaying investor in medical research, my payoff is that breakthroughs save lives. Henrietta Lacks had a type of cervical cancer that begins with a virus passed by a sexual partner. Millions of women no longer have to fear this cancer, thanks to George Gey. His "theft" of Lacks's cells led to an antiviral vaccine. (Her cells, unstolen, would never have done so.)

The primary beneficiaries of Gey's work are not biomedical companies but women just like Henrietta Lacks.

• • •

PROPERTY RIGHTS HAVE a complicated history. In large part, they came into being with the switch from hunting and gathering to farming. The clash of communal vs. individual property rights ended with Europeans essentially destroying native peoples who didn't care for fences. Who was morally right? That depends on which side you were on at the time, I guess. But the shift from communalism to capitalism was inevitable. It served a practical purpose, if not a moral one. Putting down roots to grow crops in the same place year after year required property protection.

We still need and want to own property. But that doesn't mean the definition of what is property won't change. It's changing right now.

Both liberal and conservative ideologies contribute to illogical thinking on issues surrounding biological research. Liberals contribute knee-jerk political correctness that demands a sympathetic response to people like Lacks and a wariness of letting the profit motive inspire medical breakthroughs. Conservatives chip in their conviction that putting communal well-being before individual freedoms smacks of socialism, which leads to communism as surely as marijuana leads to cocaine.

But technology and science are, as usual, in the driver's seat when it comes to influencing social mores. Witness young people's easy acceptance of Facebook and Twitter and the emergence of grass-roots industries promoting free music, blogs and videos. Traditional notions of property and privacy are being undermined by developments irresistible to people who are willing to sacrifice immediate financial reward in order to participate in interactive creative outlets.

When a whole generation freely shares everything from personal secrets to credit-card numbers, we're seeing a paradigm shift.

I don't know what will replace the old paradigm. I do know that erecting arbitrary barriers to the acquisition of new knowledge only results in a backlash more harmful than any horrors the new ways bring.

Bonnie Blodgett is a St. Paul writer and author of "Remembering Smell: A Memoir of Losing -- and Discovering -- the Primal Sense."

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