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Vol. LXV, No. 18
August 30, 2013

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Respect for Privacy
NIH Restricts Access to Henrietta Lacks’ Genomic Data

On the front page...

Last March, the scientific community—and later, by happenstance, the descendants of Henrietta Lacks, whose cervical cancer (HeLa) cells began growing in 1951 and have been crucial enough to science to have been cited in 74,000 research papers since then—learned that German researchers had published the first whole genome sequence of a HeLa cell line.

Once again, it seemed, Lacks’ gift to science was being exploited without either her consent (admittedly not required in 1951) or that of her surviving family members, whose trials were recounted in the best-selling book The Immortal Life of Henrietta Lacks, published in 2010 by Rebecca Skloot.

Within days of the German paper’s appearance, NIH director Dr. Francis Collins and NIH deputy director for science, outreach and policy Dr. Kathy Hudson were able to persuade the authors to remove the sequence from an open-access database until they could formulate a plan that would both honor the Lacks family’s privacy and also allow the scientific community to continue studies of the first-ever human cell line.


In the intervening months, Collins, Hudson and their colleagues traveled to Baltimore on three occasions to work with members of the Lacks family to draft a plan that protects and keeps personal family genetic information, while allowing science to go forward. That agreement was made public Aug. 7 in a telebriefing conducted at Johns Hopkins University, in whose hospital Lacks was a patient 62 years ago.

“This is a novel and, I believe, historic agreement,” said Collins. “It will protect the family’s interest and advance research.”

Shortly after the German paper appeared, NIH leadership learned that Dr. Jay Shendure of the University of Washington also was readying publication of a paper describing the whole genome sequence of a second HeLa cell line in the journal Nature.

“We all said, ‘Hey, let’s hold up just a minute and take stock of where we are,’” said Collins. He said the U.S. team, like their German counterparts, not only agreed with NIH but also voluntarily complied.

Hudson described for reporters a “controlled access pathway” that NIH-funded scientists will now have to follow in order to work with HeLa genome data. Briefly, investigators will have to apply to NIH for access to the data, consent to abide by terms of the agreement, acknowledge the Lacks family in any papers or presentations and deposit any future data in the NIH HeLa dbGaP (database of Genotypes and Phenotypes, hosted by NLM’s National Center for Biotechnology Information). They must also agree not to contact members of the Lacks family.

Further, NIH announced establishment of a new working group that will review scientists’ proposals to work with the HeLa genome sequence; it will report to the advisory committee to the NIH director. Two members of the Lacks family are included in the review panel.

Collins called the decision to protect Henrietta Lacks’ privacy one of the most challenging scientific, societal and ethical issues of his 20-year career at NIH. “Philanthropy is the altruistic donation of precious resources for the benefit of others. We should all count Henrietta Lacks and her family among the greatest philanthropists of our time,” he said.

On hand at the Aug. 7 media telebriefing were (from l, listing their relationship to Henrietta Lacks) Shirley Lacks, daughter-in-law; David Lacks Jr., grandson; NIH deputy director for science, outreach and policy Dr. Kathy Hudson; NIH director Dr. Francis Collins; Veronica Spencer, great-granddaughter; and Jeri Lacks-Whye, granddaughter.

On hand at the Aug. 7 media telebriefing were (from l, listing their relationship to Henrietta Lacks) Shirley Lacks, daughter-in-law; David Lacks Jr., grandson; NIH deputy director for science, outreach and policy Dr. Kathy Hudson; NIH director Dr. Francis Collins; Veronica Spencer, great-granddaughter; and Jeri Lacks-Whye, granddaughter.

Photo: Christopher Myers

“The circumstances surrounding this agreement are unique, since no consent was obtained for the derivation of the cell line and the identity of blood relatives is widely known,” he added. “This plan for data access for the HeLa genome sequence should not be seen as setting a general precedent for other immortalized cell lines.”

Henrietta’s granddaughter, Jeri Lacks-Whye of Baltimore, said, “Today’s release of the HeLa genome sequencing is a historic game-changing event. In the past, the Lacks family has been left in the dark when it came to science. For more than 60 years, our family has been pulled into science without our consent and researchers have never stopped to talk to us, to share information with us or give us a voice in the conversation about HeLa cells until now.

“We are proud of everything the HeLa cells have done for science and for society,” she continued. “And we are excited to be part of the important ongoing HeLa research to come…The family has always felt strongly about the importance of sharing Henrietta’s story and honoring her legacy by making sure people know who she was and what her cells have done for science.”

David Lacks Jr., grandson of Henrietta, spoke frankly and somewhat humorously about the evolving nature of scientific understanding that unfolds to this day with HeLa cells.

“If you’re watching that movie Wall Street, where Michael Douglas is on the beach with a big cell phone, you’re like wow, that’s so cool. Now, you look at a cell phone today, it could do a hundred thousand more things than that cell phone could ever do, and we carry them commonly in our pocket. So, that’s the same analogy I see with genome. Right now, it’s at the early stage of where the cell phone was beginning and who knows where it could be 20 years from now?”

He said his family is trying to avoid a “free for all” where anyone with access to a computer can find out what his relations’ medical risks are. “I’m not supposed to be going bald,” he joked, “and that’s certainly not the case.”

Collins pointed out to reporters that “it is possible with a DNA sequence to make some general statements about what that person’s potential future medical problems might be…but that’s very sort of weak and squishy right now...Over time, as we learn more and more about how the genome can be used to predict a future illness, as we understand heritability better, then perhaps this privacy issue will grow and not shrink.”

Author Skloot was on hand at the telebriefing; Lacks-Whye explained that it was Skloot who first notified the family in March that Henrietta’s genomic profile was publicly available.

“It was shocking and a little disappointing knowing that Henrietta’s information was out there,” said Lacks-Whye. “It was like her medical records were just there for anybody to view, just with a click of a button…It seemed like history was repeating itself.” But she said NIH’s concern in the matter “has kind of made things more settling.”

Lacks’ great-granddaughter, Veronica Spencer of Baltimore, thanked Skloot during the briefing for all she has done for the family. Skloot attended all of the NIH negotiation sessions by telephone and called the day “a really historic moment…This is the first time in history where scientists have stopped and said, wait a minute, before we go on, let’s see what the Lacks family thinks.”

David Lacks Jr. called the negotiations a “pleasure and an enjoyable experience” and expressed regret that the agreement will add an extra step for scientists. “I do want the science community to know that we are pro-science…We just wanted to add the extra step to protect our privacy…we don’t know [what future] genome science will reveal about us.”

Collins, too, called the day “a remarkable, historic moment.” He described the negotiations, which took place during evening hours, as “profound in terms of their significance.” He told the Lacks family, “Your voices are going to be the most important ones at the table.

“So the legacy of Henrietta Lacks continues and expands,” he concluded. “Maybe it’s just beginning—our ability to understand what she has given us.”

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