NIH Reaches Pact With Family of Woman on Access to DNA Data From Her Cells

The National Institutes of Health announced on Wednesday that it had reached an agreement to give the family of Henrietta Lacks, an African-American woman who died of cervical cancer in 1951, some control over researchers’ access to the genomic data of cells derived from her tumor, according to The Wall Street Journal.

The cells, commonly known as HeLa cells, are the most widely used human cell lines in existence today, the NIH said, and have already been used for decades as the basis for countless medical studies around the world.

Ms. Lacks was being treated for cervical cancer at the Johns Hopkins Hospital in 1951 when cells were removed from the biopsy of her tumor without her knowledge or permission. She died shortly afterward, at the age of 31, though researchers were able to keep her cells alive and replicating. However, her family was not informed of the research stemming from those cells.

The agreement announced by the NIH will allow two members of Ms. Lacks’s family to sit on a six-member panel that will review proposals from researchers trying to obtain the full genome-sequence data from HeLa cells. Researchers will also be asked to acknowledge the Lacks family in publications based on work done with the data, the newspaper reported.

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