Making the sequence data available to scientists will boost the Lacks family’s commitment to biomedical research

Descendants of a African-American woman, Henrietta Lacks, who died 60 years ago and whose cancer tissue gave rise to the world’s most widely used cell line, the HeLa cells, are to have a say in access to the genome sequence data of those cells.

In a comment article in this week’s issue of Nature, the U.S. National Institutes of Health (NIH) announced that it had reached an agreement with the Lacks family for controlled access to the HeLa genome sequence.

“Together, we have crafted a path that addresses the family’s concerns, including consent and privacy, while making the HeLa genomic sequence data available to scientists to further the family’s commitment to biomedical research,” said Kathy L. Hudson, NIH’s deputy director for science, outreach and policy, and the organisation’s director, Francis Collins.

In 1951, when Henrietta Lacks was treated for cervical cancer at Baltimore’s Johns Hopkins Hospital in the U.S., there were no legal restrictions on using patient cells in research. The HeLa cell line created from her biopsy sample, without her knowledge or consent, was the world’s first that could keep growing in culture indefinitely.

Since then, these cells have been extensively used for a wide variety of biomedical research and played a part in several Nobel-Prize-winning scientific discoveries.

In March this year, a row broke out after researchers at the European Molecular Biology Laboratory published a paper in the journal G3: Genes|Genomes|Genetics about the genome sequence from a HeLa cell line and placed the full sequence information in publicly accessible databases without the family's consent.

The scientists subsequently withdrew the sequence information from those databases.

The genome sequence could provide a great deal of information about the genetic predisposition of Henrietta Lacks’ descendants, argued Rebecca Skloot, who has published a best-selling book about Lacks and her family. “The family has been through a lot with HeLa: they didn’t learn of the cells until 20 years after Lacks’s death, when scientists began using her children in research without their knowledge. Later their medical records were released to the press and published without consent,” she pointed out in an article in The New York Times.

The genome data for the paper published in G3 in March as well as the sequence from a different HeLa cell line analysed for a paper appearing in Nature this week are to be deposited for controlled access through NIH's database for Genotype and Phenotypes (dbGaP).

NIH-funded researchers who sequenced other HeLa lines would be expected to deposit their data in the same database, said Dr. Hudson and Dr. Collins in their article. “We hope that scientists whose work is supported by other funders will do the same.”

A newly-formed HeLa Genome Data Access working group at the NIH, with two members of the Lacks family on it, would rapidly review applications for access to the sequence data.

Restricting access to the genome sequence “makes no sense” and was untenable, believes Vincent Racaniello, a professor of virology at Columbia University in the U.S, whose lab uses HeLa cells to study many different viruses. The HeLa genome sequence tells little about the family while allowing access to only approved individuals inhibited serendipity, which was an important component of science, he observed in an email.

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