NIH and the Lacks Family Announce a HeLa Genome Data Sharing and Use Agreement


In 1951, biomedical research took a leap forward when it was announced that cancer cells taken from a patient, Henrietta Lacks, could not only be grown in a lab, but also grown in perpetuity, creating the first immortal human cell line. This cell line – “HeLa” – is the most widely used human cell line to this day. However, at the time this cell line was created, there were no rules about research involving tissues available after clinical procedures, and the cells were obtained without consent from Henrietta.

As described by NIH Director Francis Collins on his blog and in the journal Nature, he and deputy director Kathy Hudson have been working with Henrietta’s family to discuss how biomedical researchers could access the HeLa cell genomic sequence, but still protect the family’s privacy since this genomic data has the potential to reveal personal information about her descendants.

Yesterday, NIH and the Lacks family announced an agreement that will allow HeLa-derived genomic data to be deposited into NIH’s existing dbGap database while addressing the privacy concerns of the Lacks family. Researchers will be able to apply for controlled access to whole genome HeLa cell data, and these requests will be rapidly reviewed by a new HeLa Genome Data Access working group consisting of physicians, scientists, a bioethicist, and two members of the Lacks family. We will only grant access if the terms and conditions of our data use agreement are met, such as only using the data for biomedical research, reporting back to the NIH working group with emerging results, and agreeing that the Lacks family will not be sought out individually and contacted. Additionally, NIH will expect supported researchers to deposit DNA sequences derived from HeLa cells into dbGAP, and acknowledge Henrietta and her family’s contribution in any publications or presentations resulting from use of HeLa cells.

We’ll be publishing an NIH Guide notice with more information on both the acknowledgement of HeLa cell use and how researchers who propose generating HeLa cell whole genome sequence data should address their dbGAP data submission as part of the “Research Sharing Plan” included in each application. More information on the access procedures and data use agreement can be found on the dbGAP HeLa page.

It’s important to also note that this is not a widespread change in existing consent or data-sharing policies for all immortalized cell lines. This is especially unique to HeLa cell use, as Henrietta’s identity, and her family’s identity, is well known.

I encourage you to read Dr. Collins’ blog and the article he co-authored with Dr. Hudson. Thank you to the Lacks family for working with us on this agreement, and for Henrietta and her family members’ significant contributions to biomedical research. Their generosity has boundless potential in improving the life of many, many people as a result of research using the HeLa cell line.

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