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Originally published August 7, 2013 at 8:11 PM | Page modified August 8, 2013 at 6:22 AM

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A family consents to a medical gift, 62 years later

In the journal Nature, a team of scientists from the University of Washington described the HeLa genome, which they recently sequenced. The project is a tour de force of DNA analysis, befitting the best-studied human cells in the world.

The New York Times

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Not cool Nawty. You could take aim at how she was poor and black and sought medical... MORE
This is a great example of the lack of ethics rampant in science. Excellent sweeping... MORE
She left an UNDYING legacy....but she, and her family, should have had the knowledge of... MORE

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Henrietta Lacks was only 31 when she died of cervical cancer in 1951 in a Baltimore hospital. Not long before her death, doctors removed some of her tumor cells. They later discovered that the cells could thrive in a lab, a feat no human cells had achieved before.

Soon the cells — nicknamed HeLa cells — were being shipped from Baltimore around the world. In the 62 years since — twice as long as Lacks’ life — her cells have been the subject of more than 74,000 studies, many of which have yielded profound insights into cell biology, vaccines, in vitro fertilization and cancer.

In the journal Nature on Wednesday, scientists from the University of Washington (UW) described the HeLa genome, which they recently sequenced. The project is a tour de force of DNA analysis, befitting the best-studied human cells in the world.

But the research is exceptional for another reason.

Henrietta Lacks, who was poor, black and uneducated, never consented to her cells’ being studied.

For 62 years, her family has been left out of the decision-making about that research.

Now, over the past four months, the National Institutes of Health (NIH) has come to an agreement with the Lacks family to grant it control over how Henrietta Lacks’ genome is used.

“In 20 years at NIH, I can’t remember something like this,” said Francis Collins, the institute’s director.

Though the agreement, which was announced Wednesday, is a milestone in the saga of Henrietta Lacks, it also draws attention to a lack of policies to balance the benefits of studying genomes with the risks to the privacy of people whose genomes are studied — as well as their relatives.

As the journalist Rebecca Skloot recounted in her 2010 best-seller, “The Immortal Life of Henrietta Lacks,” Lacks’ cells were removed without her consent. She gave no permission for scientists to rear them. Compounding that injustice, the scientists studying the cells and developing lucrative medicines from them did not inform her family or share any profits. Her children and other relatives discovered that Lacks was, in effect, scattered across the planet in 1973, only when a scientist called to ask for her children’s blood to study genes inherited from her.

For the Lacks family, this March brought an intense feeling of déjà vu. Scientists at the European Molecular Biology Laboratory published the genome of a line of HeLa cells, making it publicly available for downloading. Another study, sponsored by the NIH at the UW, was about to be published in Nature. The Lacks family was made aware of neither project.

“I said, ‘No, this is not right,’” said Jeri Lacks Whye, one of Henrietta Lacks’ grandchildren. “They should not have this up unless they have consent from the family.”

When the UW researchers had originally applied to the NIH for a grant to sequence the HeLa genome, no red flags went up about contacting the Lacks family. “I don’t think we would have anticipated this had we looked at the grant,” said Kathy Hudson, the NIH deputy director for science, outreach and policy. “Hindsight is 20/20.”

Once reports of the controversy emerged, the European researchers took down their public data, and the publication of the UW paper was stopped. Collins and Hudson made three trips to Baltimore to meet with the Lacks family to discuss the research and what to do about it.

“The biggest concern was privacy — what information was actually going to be out there about our grandmother, and what information they can obtain from her sequencing that will tell them about her children and grandchildren and going down the line,” Lacks Whye said.

Lacks’ family members have never shared in any of the untold riches unlocked by the HeLa cells, and they won’t make any money under the agreement announced Wednesday by the family and the NIH.

But they will have some control over scientists’ access to the cells’ DNA code. And they will receive acknowledgment in the scientific papers that result.

Under the agreement, two family members will sit on a six-member committee that will regulate access to the genetic code.

“The main issue was the privacy concern and what information in the future might be revealed,” David Lacks Jr., grandson of Henrietta Lacks, said at a news conference.

With this agreement in place, the UW researchers were able to publish their results. Their analysis goes beyond the European study in several ways. Most important, they show precisely where each gene is situated in HeLa DNA.

A human genome is actually two genomes, each passed down from a parent. The two versions of a gene may be identical, or they may carry genetic variations setting them apart.

“If you think of the variations as beads on a string, you really have two strings,” said Jay Shendure, who led the UW genome study. “The way we sequence genomes today, for the most part we just get a list of where the genes are located, but no information about which ones are on which string.”

Shendure and his colleagues have developed new methods that allow them to gather that information. By reconstructing both strings of the HeLa genome, they could better understand how Lacks’ healthy cells had been transformed over the past 60 years.

For example, they could see how Lacks got cancer. Cervical cancer is almost always caused by human papillomavirus infections. The virus accelerates the growth of infected cells, which may go on to become tumors.

Shendure and his colleagues discovered the DNA of a human papillomavirus embedded in Lacks’ genome. By landing at a particular spot, Lacks’ virus may have given her cancer cells their remarkable endurance.

“That’s one of the frequent questions that I and the Lacks family get whenever we talk about this stuff,” Skloot said. “The answer was always, ‘We don’t know.’ Now, there’s at least somewhat of an answer: Because it happened to land right there.” (Skloot is a friend of the writer, who supplied an endorsement for her book.)

Includes material from The Associated Press

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