| Bonie Blodgett: The immortal life of Henrietta Lacks |
Author: Eva Pastor
Date: 08-25-10 14:06
Source: The Star Tribune
URL: http://www.startribune.com/opinion/commentary/101193569.html?page=1&c=y
Date published: August 21st 2010
Scott Velders, MD of Hennepin County Medical Center suggested that I post this book review from the Star Tribune. He stated: "I read it this summer and feel that it is a 'must read' for every IRB member. The book is a startling reminder of the importance of informed consent even for "low risk" research. Ms. Lacks and several of her family members experienced great suffering, despite the fact that much of the research that is described in the book meets the criteria for expedited review."
Bonie Blodgett: The immortal life of Henrietta Lacks
By BONNIE BLODGETT
http://www.startribune.com/opinion/commentary/101193569.html?page=1&c=y
Last update: August 21, 2010 - 5:10 PM
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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| Re: Bonie Blodgett: The immortal life of Henrietta Lacks |
Author: Eva Pastor
Date: 08-25-10 20:46
Source:
URL:
Date published: August 25th 2010
I don't knoe why these responses are coming to my email and not being posted as eplies to the message! Here' one from Paul W. Goebel, Jr., CIP:
No, no, no! The wrong conclusions are being drawn from this situation. The reviewer is applying today's ethical standards to research decisions that were made 59 years ago.
(1) In 1951 it was entirely ethical and appropriate to take a smidgeon of tissue for non-therapeutic laboratory use without obtaining consent or even informing the person that you had done so. Obtaining consent for using "leftovers" for basic research did not become an established and universally
observed and enforced standard until years after the 1981 comprehensive IRB and informed consent regulations went into effect. Dr. Gey is to be commended for getting her to sign a permission form.
(2) Dr. Gey was not the treating physician. No treatment decisions were influenced by the donation of the cell sample. Dr. Gey lived in another world. He did not commercialize the cell line. He gave samples to other researchers without charge. He even paid for shipment. Someone else started the money machine.
(3) I don't see how you can fault Dr. Gey or Johns Hopkins for not giving a huge sum of money to the Lacks family, when the cell line was not a revenue stream for Dr. Gey or the university.
(4) In contrast to the "Professor" I did read the book. I didn't detect overt racism in the treatment of Henrietta Lacks. She was given the best treatment for her cancer that Johns Hopkins had to offer. She presented with advanced cancer for which little could be done. The success in treating advanced cancers has not progressed very much in the intervening 60 years. Yes, she was segregated from white patients but that was the norm for the time. The treating physicians would have been dismissed or arrested if they had done otherwise.
(5) It is not established law that the cells were the property of the Lacks family. The only study subject who sued for part of the profit from sale of his cancer cells lost the suit. It is common practice today for study subjects to "donate" tissue samples for research purposes. They are told they will not receive any cut of profits that might be made.
(6) I agree the Lacks family has had and is having a hard time. Let's remember there was no "great society" at that time. There are not going to be new taxes to help the less fortunate. We are going to get more people existing in grinding poverty, not fewer. The Lacks family is going to have a lot of company, and it will be people of all races.
I don't blame the reviewer for ringing the alarmist bell. That is what you have to do to sell newspapers or get people to watch your TV program. But be careful about accepting the statements as fact without verification. In my view, Ms. Skloot's book stands out because it presents a very accurate
account of what happened. I highly recommend it to anyone interested in protecting the rights and welfare of human subjects of research.
Paul W. Goebel, Jr., CIP
pwgconsult@comcast.net
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| Re: Bonie Blodgett: The immortal life of Henrietta Lacks |
Author: Eva Pastor
Date: 08-25-10 20:53
Source:
URL:
Date published: August 25th 2010
Another reaction from Erica C. Jonlin, PhD:
This is a very misleading book review and is inaccurate and was a poor choice of items to send out to the listserv. Skloot does not depict Gey as a burglar and makes it clear he did not work on those cells to make money. In fact, he gave out the cells for free. Furthermore, I met Skloot and she does NOT say that Henrietta's descendants "should. . . receive free medical care plus a cut of the proceeds. . ." Skloot herself set up a fund from the proceeds of her book, but she understands the complexities involved in intellectual property law.
People SHOULD read Skloot's and see what's in it for themselves. It is riveting and important and intellectual and very well-balanced.
Erica Jonlin
former IRB administrator
Erica C. Jonlin, PhD
Regulatory Manager
Gene Therapy and Stem Cell Research
University of Washington
Institute for Stem Cell and Regenerative Medicine
(206) 221-6612 or 221-0339
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| Re: Bonie Blodgett: The immortal life of Henrietta Lacks |
Author: Eva Pastor
Date: 08-25-10 21:03
Source:
URL:
Date published: August 25th 2010
And one mopre came from Dian Dooley (dian@hawaii.edu)
Eva and all,
I totally agree. I read the book this summer, too, soon after it was published. There is another excellent review of the book in Issues in Science and Technology, Summer 2010, by Dr. Norman Fost (Medical Ethicist) at University of Wisconsin, Madison.
Indeed, it SHOULD be required reading of all IRB members, speaking as one myself!
Dian
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