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Deborah Lacks wanted answers. In 1974, she asked a leading medical geneticist to tell her about HeLa cells, a tissue-culture cell line derived from the cancer that had killed her mother Henrietta in 1951. The researcher, who was collecting blood from the Lacks family to map HeLa genes, autographed a medical textbook he had written and said that everything she needed to know lay within its dense pages.
It would be more than 30 years before the family got a better explanation.
Now the director of the US National Institutes of Health (NIH), Francis Collins, is trying to make up for decades of slights. Over the past four months, he has met Lacks family members to answer questions and to discuss what should be done with genome data from their matriarch’s cell line.
“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,” says Henrietta’s grandson David Lacks Jr. (Deborah Lacks died in 2009.) On 7 August, Collins announced that the family has endorsed case-by-case release of the information, subject to approval by a committee that will include family members (see page 141).
The consensual approach is a sea change from the dismissive treatment of the past, says Rebecca Skloot, the journalist who recounted the scene between Deborah Lacks and the researcher in her 2010 book The Immortal Life of Henrietta Lacks. “It was the first time in the very long history of HeLa cells that any scientists have sat down and devoted complete attention to explaining to the family what was going on,” she says (see ‘The Lacks legacy').
The agreement allows the publication of a US government-funded HeLa genome sequence as well as the re-release of data that were pulled from public view soon after publication in March because of the family’s concerns. Nature’s News team learned of the negotiations last month but agreed to delay coverage so as not to impede the talks. Brokered during meetings at Johns Hopkins School of Medicine in Baltimore, Maryland, the deal rekindles debates over consent and ownership of tissues, and data that arise from their study, at a time when the NIH is updating such rules.
The HeLa cell line was established in 1951 from a biopsy of a cervical tumour taken from Henrietta Lacks, a working-class African-American woman living near Baltimore. The cells were taken without the knowledge or permission of her or her family, and they became the first human cells to grow well in a lab. They contributed to the development of a polio vaccine, the discovery of human telomerase and countless other advances. A PubMed search for ‘HeLa’ turns up more than 75,000 papers. “My lab is growing HeLa cells today,” Collins told Nature in an interview on the NIH campus in Bethesda, Maryland. “We’re using them for all kinds of gene-expression experiments, as is almost every molecular-biology lab.”
On 11 March, weeks before Collins drove to Baltimore to meet the Lacks family for the first time, a team led by Lars Steinmetz at the European Molecular Biology Laboratory (EMBL) in Heidelberg, Germany, published a paper called ‘The genomic and transcriptomic landscape of a HeLa cell line’ (J. J. M. Landry et al. Genes Genomes Genet. http://dx.doi.org/10.1534/g3.113.005777; 2013). News coverage (see go.nature.com/inxzuw) noted the link to Henrietta Lacks, but not privacy concerns.