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.