Stem-cell line progenitor Henrietta Lacks’ family regains a modicum of genetic privacy

HeLa cells
HeLa cells, the world's first stem cell line, originally derived from the aggressive cervical cancer cells of Henrietta Lacks. Image via NPR. Credit: Tom Deerinck/NCMIR

The family of the late Henrietta Lacks finally got the chance to weigh in on how scientists use cells taken from her — without consent — more than 60 years ago.

The National Institutes of Health and the Lacks family have agreed to give scientists access to the genetic sequence of the cells, with some restrictions to safeguard her relatives’ privacy. NIH Director Dr. Francis Collins described the agreement covering these so-called HeLa cells, and how it came to be in the journal Nature.

The situation, he says, shines a bright light on a rising ethical issue in biomedicine: How do researchers protect people’s privacy when they donate samples for genomic sequencing and scientific experiments?

Read the full, original story here: Decades After Henrietta Lacks’ Death, Family Gets A Say On Her Cells

Additional resources:

  • NIH director explains HeLa agreement,” Nature
    This Q&A with National Institutes of Health director Francis Collins includes information about the interaction between the researchers and the Lacks, and discussion of the ethics of using tissue from a donor that never gave consent. 
  • Quick guide to HeLa cells, Wellcome Trust
    Get a quick introduction to the history and current use of HeLa cells.
  • HeLa-cious coverage,” Columbia Journalism Review
    Curtis Brainard takes the media to task for glossing over ethical concerns when covering the Henrietta Lacks cell-line saga. He had this to say about press coverage of the March 2013 online release of the sequenced HeLa cell line data:

Anticipating questions about the Lacks family’s privacy, the press release assured readers, “No, we cannot infer anything about Henrietta Lacks’ genome, or about her descendants, from the data generated in this study,” but experts quickly took to social media to question the veracity of that claim.

On Twitter, Yaniv Erlich, a geneticist at the Whitehead Institute for Biomedical Research, called the statement a “lie,” and Jonathan Eisen, an evolutionary biologist University of California, Davis, wrote that he was “a bit stunned that the people publishing the HeLa genome appear to not have gotten consent from the family.”

Journalists, on the other hand, seemed not to notice, or even consider, such concerns.

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