Privacy and the HeLa Genome

European scientists have taken down the HeLa genome after publishing it without the consent of Henrietta Lacks’s family.

By | March 26, 2013


A team of European researchers earlier this month published the genome sequence of HeLa cells, the first cells to be grown immortally in culture. They have now taken the sequence down from repositories after hearing from the family of Henrietta Lacks, the woman from whom the cells were taken in 1951.

Rebecca Skloot, author of the 2010 book The Immortal Life of Henrietta Lacks, wrote on The New York Times Opinion pages that the publication was in violation of the family’s privacy, since the cells contain their genetic information.

“The Lacks family is proud of HeLa’s contributions to society, and they don’t want to stop HeLa research,” she wrote. “But they do want to learn about the HeLa genome—how it can be used for the good of science while still protecting the family’s privacy—so they can decide whether to consent to its publication.”

Researchers originally took cervical tumor cells from Henrietta Lacks, a black woman in Baltimore, without her consent, and her children were later studied without explanation. A press release associated with the current study claimed that it was impossible to tell anything about the Lacks family from the sequence, but Skloot said this was untrue.

 “That is private family information,” Jeri Lacks-Whye, Henrietta Lacks’ granddaughter, told Skloot. “It shouldn’t have been published without our consent.” By the time the researchers took the sequence down it had been downloaded at least 15 times.

Skloot argued that laws about using DNA sequences are outdated, since they were made at a time when it was not possible to get much information out of DNA, and since we will soon have access to even more detailed information than we have today. Francis Collins, head of the National Institutes of Health, agreed. “This latest HeLa situation really shows us that our policy is lagging years and maybe decades behind the science,” he told Skloot. “It’s time to catch up.”


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Avatar of: Brian Hanley

Brian Hanley

Posts: 36

March 26, 2013

What next? Are we to collect and deliver the tons of HeLa cells around the world to her family? Will her family talk to those cells? Read the cells bedtime stories? Shall we be forced to keep them alive as if they were a person?

Shall we be served with summons to hie ourselves to court to hear some lying attorney declaim how Henrietta's poor body has been violated with pipetters shoved into her broth? Will we be accused of raping her next? Her cancer was a cervical cancer! Will it be, "Oh, my god what a horror that poor soup broth has endured?"  

Those cells aren't Henrietta, any more than the snot I blow (which has a few living cells in it) is me. There is no person, just a film of cells that can be induced to float around for short periods of time. 

HeLa cells are LESS Henrietta than my snot is me. Why? Because it's a cancer. Those are the cancer cells that MURDERED their poor Henrietta. Those cells were and are a disease. No clone of those cells can be grown into a near duplicate of Henrietta Lacks. If you found a closely enough matched relative of Henrietta's those cells could conceivably take root and murder another member of that family. 

This whole thing with HeLa cells and her family is pseudo-ethics gone mad. Nothing was done to Henrietta, or to her family. 

This whole thing is purified political horsepucky ginned up out of baloney to make money. Henrietta's family are full of it. They are grabbing this to make a case in order to make money out of it. It's all about the settlement. 

Yeah, right. Henrietta's grandkids really, really care about her. They care so much that they want the monster that murdered their wonderful grandma to be returned to them so they can tenderly honor it. What garbage. 

Avatar of: jeenious


Posts: 45

March 26, 2013

Homogeneously, how long might it be before someone who has patented my particular genome sues me for infringement for continuing to replicate myself.

So far, I seem to have been able to rely upon at least some partial squatter's rights, even if I cannot sell copies of my cells to someone doing research, who is not an owner or a licensed user of my genetic "program."

Avatar of: madhupjoshimd


Posts: 16

March 27, 2013

Everyone can have different opinions. However, 2 claim, without proof that this is being done for financial reasons is not supported by my reading of this article. I think the biggest disgrace was testing the family without informed consent. Hopefully, scientists & Doctors will refuse to engage in this type of research without true informed consent. Sincerely, Madhup Joshi, MD, Maui, Hawaii

Avatar of: kienhoa68


Posts: 37

March 28, 2013

Typical over reaction. We leave our DNA everywhere we go. Sounds more like vanity in this case.

Avatar of: Shengqian


Posts: 17

March 28, 2013

This is pseudo-ethics, imaginary family privacy issue, more like some self-righteous people want attention and money. 

Avatar of: FJScientist


Posts: 29

March 28, 2013

There is not reason to castigate Lacks' descendents for this, as many of the comments to this column have done. The debate about the degree to which genetic information remains confidential is ongoing and society has deemed that one must err with caution. This is doubly true when all signs point towards the maintenance of confidentiality that the Lacks' descendents are requesting.

The family is doing little more than forcing the evaluation of proper procedure. What is 'obvious' to scientist A (highly rearranged tumor cell bears little resemblance to the person collected from 60 years ago) is not as clear to even scientist B (what can we establish about the patient from the remnants) and certainly not to the family who have every right to wonder if the release of this data may damage them in any way. 


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