Ask, and science may receive

For decades, clinicians and researchers have been taking leftover cells, tissue, blood and organs from patients and using them in the name of advancing scientific and medical research. Tremendous gains have been realized from these leftovers, but each milestone has been marked by the unresolved issue of informed consent—because sometimes, these researchers are not asking patients if it’s OK to use their leftovers.

September5th,2013
Amy Swinderman

I am a notorious hater of leftovers. By that, I meanleftover food. I'll package up extra food with good intentions of getting mymoney's worth, only to find these packages untouched and shoved into a farcorner of the fridge a week (or more) later. Once in a while, there areleftovers I absolutely plan to eat, like a container of leftover chickenpiccata from my favorite Cleveland restaurant, Bucci's, but my husband Erichelps himself to them before I can give them a second thought.
 
"Did you eat my chicken piccata?" I ask incredulously.
 
 
"Of course I did," Eric replies. "You hate leftovers."
 
 
In these instances of marital conflict, it's the principle ofthe matter. "Just ask me," I say. "Imay very well say no, but at least give me the common courtesy and respect ofasking me if I want to give you my leftovers."
 
 
So, no big whoop. He asks, and I give an honest answerdepending on my particular wishes, and we move on with our lives—because it'sreally not that hard to ask someone if it is OK for you to take something.
 
This simple life lesson seems to have been totally lost onthe scientific world. For decades, clinicians and researchers have been taking leftovercells, tissue, blood and organs from patients and using them in the name ofadvancing scientific and medical research. Tremendous gains have been realizedfrom these leftovers, but each milestone has been marked by the unresolvedissue of informed consent—because sometimes, these researchers are not askingpatients if it's OK to use their leftovers.
 
And in the case of Henrietta Lacks and multiple generationsof her family, that's a big whoop. In 1951, Lacks, a poor tobacco farmer inMaryland, sought treatment at Johns Hopkins Hospital for a tumor on her cervix.Doctors didn't know it at the time, but Lacks had Human Papillomavirus, or HPV. Lacks was treated with the standardof care in that era: With radium tube inserts sewn into place. Unfortunately,her cancer was extremely aggressive and quickly metastasized throughout herbody—so much so that during her autopsy, medical examiners remarked that herinsides looked as though they were adorned with pearls.
 
 
But before Lacks' rapid demise, during her radiationtreatments, a researcher named Dr. George Gey asked that two samples of Lacks'cervix be removed, one healthy part and one cancerous part. Guy did not askLacks or her family for permission. Neither did her physician. Neither did hernurse. No one asked, in fact. It's important to point out that Lacks was anAfrican American woman, and during the time of these events, Johns Hopkins washer only choice for a hospital since it was the only one in proximity to herhome that treated black patients. Because many black patients were unable topay their medical bills, taking samples from them to be used in research wasalmost considered restitution.
 
 
At the time, scientists had been trying to grow human cellsin the lab for years, without much success. But to Gey's surprise, Lacks' tumorcells grew with "mythological intensity." Gey shared his observations with hisclosest colleagues, who asked if they could have some. And Gey said yes, andstarted shipping the HeLa cells around the world.
 
 
Fast-forward about six decades, Lacks' cells—now known asHeLa cells—are the first "immortal" human cells grown in culture. It's almostimpossible to estimate the impact they have had on medical research. HeLa cellsare credited with helping to produce the polio vaccine and advances in in-vitrofertilization, cancer, AIDS, cloning and gene mapping. They were even used inearly space missions to test the effects of gravity on humans. If you were topile all of the HeLa cells grown to date, they would weigh more than 100 EmpireState Buildings.
 
 
It's safe to say that Lacks' cells traveled much more thanshe ever did, as she grew up on a small tobacco farm in rural Virginia. It'salso both safe and correct to say that the money involved in the production ofHeLa cells far exceeded Lacks' wildest imagination about her family's financialsituation. Having died in 1951, she was never aware of her cells' impact onscience. Neither was her family, until the early 1970s, when her children gotcalls from researchers who wanted blood samples from them to learn more aboutthe family's genetics. At first, they thought the researchers wanted to findout if they had the same cancer their mother did. No one asked them if theyunderstood the scientific implications of the HeLa cell line. And they didn'tunderstand that at all.
 
 
That started changing about a decade ago, when sciencewriter Rebecca Skloot started poking around the Lacks family, hoping to learnmore about the woman behind the cell line. At first, the Lacks family wassuspicious. They had already been through the ringer when the media descendedon their quiet lives to question them, and at least one con artist fraudulentlyholding himself out to be an attorney had taken advantage of them. Somehow,Skloot eventually earned their trust, and dared to ask: How do you feel aboutyour mother's cells being taken without her permission? Skloot details theseevents in her New York Times-bestsellingbook, "The Immortal Life of Henrietta Lacks," which should be required readingfor any scientist.
 
Armed with a better understanding of how the cells wereprocured and how they have been used, the Lacks family was understandablyupset. Something didn't sit right with them. In particular, they could notbelieve that their mother's cells had done so much for human health, yet theywere all too poor to afford proper healthcare for themselves. So they startedasking questions.
 
They finally got some answers last month, when Dr. FrancisCollins, director of the U.S. National Institutes of Health, met with the Lacksfamily to address their concerns.
 
"We wanted to get a better understanding of what informationwas going to be out there about Henrietta, and what information was going to beout there about us," Henrietta's grandson, David Lacks Jr., told the media.
 
Collins asked the Lacks family if they would be OK if theinformation gleaned from the HeLa cell line and their own cells was restrictedto researchers who must apply for permission to access it. And the Lacks familysaid yes. They also agreed to sit on a committee that decides how HeLa cellline data is used in biomedical research and field requests from researcherswho want to contact the family for further testing.
 
Almost concurrently, the U.S. government is tackling thissticky issue of informed consent, seeking a way to give subjects greater say inhow their cells and personal information is used. Collins announced, "Goingforward, I'm very much of the mind that the most appropriate way to showrespect for persons is to ask. Ask people, 'Are you comfortable having thisspecimen used for future genomic research for a broad range of biomedicalapplications?'— if they say no, no means no."
 
 
Presumably, until recently, researchers didn't want to asksubjects for permission to use their leftovers on the chance they may sayno—potentially robbing scientists of the ability to investigate health anddisease. But who's to say they wouldn't say yes? It doesn't hurt to ask. Ericcan tell you: It never hurts to ask.
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