RARE Daily

Estate of Henrietta Lacks Sues Ultragenyx for Use of Cell Line to Produce Gene Therapies

August 11, 2023

Rare Daily Staff

The estate of Henrietta Lacks, the woman whose tissue was used to create the so-called HeLa cell line without her consent, sued Ultragenyx Pharmaceutical in U.S. District Court in Maryland as it charged the biotech company has profited from the unauthorized use of those cells to produce gene therapies.

In 1951, physicians at Johns Hopkins removed cervical tissues from Henrietta Lacks, a woman with cervical cancer, without her consent or knowledge. The cells the physicians removed had unique properties and they were able to cultivate them to create a cell line that has been widely used in research and has been used to produce medical innovations.

Ultragenyx has used the HeLa cells to produce AAV vectors for gene therapies and has been able to increase yields as a result, the suit alleges.

The filing of the suit follows a confidential settlement the estate reached at the start of August with Thermo Fisher over its use of the cell line.

The lawsuit charges Ultragenyx with a single cause of action – unjust enrichment – for its profiting from the HeLa cell line without consent.

It seeks to disgorge Ultragenyx of profits obtained through commercialization of the HeLa cell line, permanently enjoin Ultragenyx from using the HeLa cell line without the permission of the estate, and other remedies.

At publication time, Ultragenyx had not responded to a request for comment.

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