NIH reaches deal with Lacks family to access HeLa genome

The National Institutes of Health on Wednesday announced that it had brokered a deal with the family of the late Henrietta Lacks to give researchers access to the genome of the HeLa cell line. The HeLa genome will be available to those who have applied for access and have consented to use the information only for biomedical research. A panel of board members, including members of the Lacks family, will evaluate and approve proposals that request the genome and studies that publish on the genome for proper use. In addition, an acknowledgement to the Lacks family is required in all publications that include data from the genome. This decision paves the way for consent to an individual’s biological property and privacy.

HeLa cells were the first immortal cell line to be cultured. These cells originally were obtained in 1951 without consent from Henrietta Lacks, who had an aggressive form of cervical cancer caused by human papilloma virus. At the time, there were no set rules for obtaining a patient’s cell lines. Thus, the Lacks family did not know that the cells were in use across the world in various research studies for more than 20 years. Author Rebecca Skloot lays out the history of the cells and the Lacks family’s history in the widely renowned book “The Immortal Life of Henrietta Lacks.”

In March, the HeLa genome was published in the journal G3: Genes, Genomes, Genetics without consent from the Lacks family, which sparked an uproar from the scientific community and an op-ed response from Skloot. Ultimately, the paper renewed talks about patients’ rights to their own biological samples. The Scientist interviewed Skloot about her op-ed piece and her involvement in the talks between the Lacks family and the NIH, in which she participated, she said, “as more translator than moderator or negotiator.”

ASBMB supports the NIH’s decision to include the Lacks family and reach an agreement that benefits both the family’s rights and the scientific community.

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