HENRIETTA LACKS FORMALLY RECOGNIZED AS SOURCE OF HeLa RESEARCH CELLS: Descendants of woman whose cells were the first cultivated in a laboratory welcome National Institutes of Health announcement

Tom McCarthy
The Guardian.com

Henrietta Lacks died of cancer in 1951 – her tumor cells have been an invaluable resource for researchers. Photo: Courtesy of the Henrietta Lacks Foundation

For decades, scientists have used the cells of a woman who died young to conduct research that has prolonged innumerable lives. Now, for the first time, her contribution is to be formally recognized.

The National Institutes of Health (NIH) announced on Wednesday that genetic research based on cells taken from Henrietta Lacks, known as HeLa cells, would include acknowledgement in published form of the woman and her life. The change in protocol, which strictly applies only to NIH grant recipients but which all researchers are encouraged to adopt, was welcomed by descendants of Lacks, who died in 1951. The move could also lead the way to better privacy measures for research participants and better data-sharing among scientists.

"We are happy, we are very happy, that from this point on, publications involving the HeLa genome will recognize Henrietta Lacks," granddaughter Jeri Lacks-Whye said, on a conference call arranged by the NIH to make the announcement. "For more than 60 years our family has been pulled into science without our consent … We are happy to be part of that conversation now, and we see this as an important step."

Cancer cells taken from Lacks as part of a biopsy in February 1951 were the first human cells to be successfully cultivated in a laboratory. The cells were – and are – unusually resilient, for reasons scientists still don't fully understand. HeLa cells became instrumental to such medical breakthroughs as the development of a polio vaccine and figure in tens of thousands of scientific papers.

Long missing from the dramatic story of HeLa cells was the story of the woman who provided them. Lacks, an African-American native of Virginia, died eight months after her biopsy, at age 31 and leaving five children. She was not informed that her cells were to be used in research. She was not identified publicly as the source of the cells until 1971, by which point her genetic material had been distributed to labs worldwide. Her story was not widely known until the publication in 2010 of a book about the case, The Immortal Life of Henrietta Lacks, the product of 10 years' work by the author Rebecca Skloot. Then, suddenly, Lacks was famous. The book spent 125 weeks on the New York Times bestseller list and is being adapted for a movie that will be co-produced by Oprah Winfrey.

Lacks family members collaborated with the book, describing both their pride in the legacy of HeLa cells and their anger that Lacks' genetic material – and by extension their genetic material – had been taken and shared without her knowledge. Some wondered whether the family shouldn't have benefited financially from the advancements enabled by HeLa research, which coincided with the rise of the biomedical industry.

"We should all count Henrietta Lacks and her family among the greatest philanthropists of our time, when you consider how they have contributed to the advancement of science and human health," said the NIH director, Francis S Collins, on Wednesday.

The agreement between the NIH and the Lacks family was reached through an informal mediation process that began in March, when German researchers published the first whole-genome sequence of a HeLa cell line – without consulting members of the Lacks family, to their dismay. Skloot, the author, described the episode in an op-ed in the New York Times. The research was removed from public databases, but Collins saw the need for a broader solution.

"This was truly a unique moment, when we all said, 'Hey, let's hold up a minute and take a stock of where we are,'" Collins said.

Coincidentally, NIH-funded researchers were about to publish a second whole-genome sequence of a different HeLa cell line. Collins asked the researchers and the publisher, Nature magazine, to wait until an agreement could be reached with the Lacks family. They complied. Collins and his staff then began meeting with the family.

The deal that resulted not only provides for official acknowledgment of Lacks but also restricts the dissemination of her and her family's genetic information. Before any new NIH-funded genetic research on HeLa cells can published, it will have to receive approval by a board that includes two Lacks family members.

"This was an historic and really exciting and emotional day for everyone involved, this kind of moment is what [the Lacks family has] been hoping for," Skloot told the Guardian. "It's the third generation. One of the things they've said many times is, 'Our grandmother didn't get to have a voice in this. Our parents didn't get to have a voice either. We want that to stop with us."

Lacks-Whye called the agreement "a historic, game-changing event".
"We are proud of everything the HeLa cells have done for science and society," she said. "And we are excited to be part of the important, ongoing HeLa research to come".