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Ask, and science may receive
September 2013
by Amy Swinderman  |  Email the author

I am a notorious hater of leftovers. By that, I mean leftover food. I'll package up extra food with good intentions of getting my money's worth, only to find these packages untouched and shoved into a far corner of the fridge a week (or more) later. Once in a while, there are leftovers I absolutely plan to eat, like a container of leftover chicken piccata from my favorite Cleveland restaurant, Bucci's, but my husband Eric helps 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 of the matter. "Just ask me," I say. "I may very well say no, but at least give me the common courtesy and respect of asking me if I want to give you my leftovers."  
So, no big whoop. He asks, and I give an honest answer depending on my particular wishes, and we move on with our lives—because it's really 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 on the scientific world. 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.
And in the case of Henrietta Lacks and multiple generations of her family, that's a big whoop. In 1951, Lacks, a poor tobacco farmer in Maryland, 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 standard of care in that era: With radium tube inserts sewn into place. Unfortunately, her cancer was extremely aggressive and quickly metastasized throughout her body—so much so that during her autopsy, medical examiners remarked that her insides looked as though they were adorned with pearls.  
But before Lacks' rapid demise, during her radiation treatments, 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 ask Lacks or her family for permission. Neither did her physician. Neither did her nurse. No one asked, in fact. It's important to point out that Lacks was an African American woman, and during the time of these events, Johns Hopkins was her only choice for a hospital since it was the only one in proximity to her home that treated black patients. Because many black patients were unable to pay their medical bills, taking samples from them to be used in research was almost considered restitution.  
At the time, scientists had been trying to grow human cells in the lab for years, without much success. But to Gey's surprise, Lacks' tumor cells grew with "mythological intensity." Gey shared his observations with his closest colleagues, who asked if they could have some. And Gey said yes, and started shipping the HeLa cells around the world.  
Fast-forward about six decades, Lacks' cells—now known as HeLa cells—are the first "immortal" human cells grown in culture. It's almost impossible to estimate the impact they have had on medical research. HeLa cells are credited with helping to produce the polio vaccine and advances in in-vitro fertilization, cancer, AIDS, cloning and gene mapping. They were even used in early space missions to test the effects of gravity on humans. If you were to pile all of the HeLa cells grown to date, they would weigh more than 100 Empire State Buildings.  
It's safe to say that Lacks' cells traveled much more than she ever did, as she grew up on a small tobacco farm in rural Virginia. It's also both safe and correct to say that the money involved in the production of HeLa cells far exceeded Lacks' wildest imagination about her family's financial situation. Having died in 1951, she was never aware of her cells' impact on science. Neither was her family, until the early 1970s, when her children got calls from researchers who wanted blood samples from them to learn more about the family's genetics. At first, they thought the researchers wanted to find out if they had the same cancer their mother did. No one asked them if they understood the scientific implications of the HeLa cell line. And they didn't understand that at all.  
That started changing about a decade ago, when science writer Rebecca Skloot started poking around the Lacks family, hoping to learn more about the woman behind the cell line. At first, the Lacks family was suspicious. They had already been through the ringer when the media descended on their quiet lives to question them, and at least one con artist fraudulently holding 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 about your mother's cells being taken without her permission? Skloot details these events in her New York Times-bestselling book, "The Immortal Life of Henrietta Lacks," which should be required reading for any scientist.
Armed with a better understanding of how the cells were procured and how they have been used, the Lacks family was understandably upset. Something didn't sit right with them. In particular, they could not believe that their mother's cells had done so much for human health, yet they were all too poor to afford proper healthcare for themselves. So they started asking questions.
They finally got some answers last month, when Dr. Francis Collins, director of the U.S. National Institutes of Health, met with the Lacks family to address their concerns.
"We wanted to get a better understanding of what information was going to be out there about Henrietta, and what information was going to be out there about us," Henrietta's grandson, David Lacks Jr., told the media.
Collins asked the Lacks family if they would be OK if the information gleaned from the HeLa cell line and their own cells was restricted to researchers who must apply for permission to access it. And the Lacks family said yes. They also agreed to sit on a committee that decides how HeLa cell line data is used in biomedical research and field requests from researchers who want to contact the family for further testing.
Almost concurrently, the U.S. government is tackling this sticky issue of informed consent, seeking a way to give subjects greater say in how their cells and personal information is used. Collins announced, "Going forward, I'm very much of the mind that the most appropriate way to show respect for persons is to ask. Ask people, 'Are you comfortable having this specimen used for future genomic research for a broad range of biomedical applications?'— if they say no, no means no."  
Presumably, until recently, researchers didn't want to ask subjects for permission to use their leftovers on the chance they may say no—potentially robbing scientists of the ability to investigate health and disease. But who's to say they wouldn't say yes? It doesn't hurt to ask. Eric can tell you: It never hurts to ask.



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