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The Dripby Fern Shen10:52 amMar 25, 20130

Lacks cells used again without consent

Above: A 1945 photo of Henriette Lacks, the unwitting source of cells used to create an “immortal” cell line for research.

After the 2010 publication of the widely acclaimed The Immortal Life of Henrietta Lacks, you’d think scientists would be savvy, if not sensitive, when it comes to making further use of the “immortal” cell line created by research scientists without the Turner Station woman’s consent.

But when researchers announced last week that they sequenced the genome of the cells famously taken from Lacks and published the results, they were asked after the fact if they had gotten the family’s consent.

“No,” came their answer, Immortal Life author Rebecca Skloot  reveals in a piece published over the weekend in the New York Times.

Jeri Lacks-Whye, Lacks’s granddaughter, told Skloot she thinks the information is “private” and “shouldn’t have been published without our consent.”

Is this uninformed “scientist-bashing,” as some commenters have charged?

The researchers in Germany who published the sequencing results, European Molecular Biology Laboratory, have said  “We cannot infer anything about Henrietta Lacks’s genome, or of her descendants, from the data generated in this study.”

Consent was not technically required to publish the HeLa gene sequencing, Skloot concedes, but she says the EMBL claim is not true.

One scientist, she said, easily disproved it by uploading HeLa’s genome to a publicly available web site for translating genetic information: “Minutes later, it produced a report full of personal information about Henrietta Lacks, and her family.”

Skloot writes that EMBL apologized and “quietly took the data off-line,” but argues that more work is needed to reform standard practice involving consent issues so that genetic research can continue with losing the public’s trust.

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