Sequencing Of HeLa Genome Revives Genetic Privacy Concerns

A micrograph of HeLa cells, derived from cervical cancer cells taken from Henrietta Lacks.

A micrograph of HeLa cells, derived from cervical cancer cells taken from Henrietta Lacks.

Last week, scientists announced they had sequenced the full genome of the most widely used human cell line in biology, the "HeLa" cells, and published the results on the web. But the descendents of the woman from whom the cells originated were never consulted before the genetic information was made public, and thus never gave their consent to its release.

Morning Edition's Renee Montagne spoke to Rebecca Skloot, author of the best-selling book The Immortal Life of Henrietta Lacks, which chronicles the cells and the family tied to them. Skloot also wrote an op-ed in Sunday's New York Times about the need for international standards to protect the privacy of genetic data.

Henrietta Lacks was a poor black tobacco farmer in southern Virginia. In 1951, she was diagnosed with cervical cancer. Her doctor, without telling her, took a little piece of her tumor to study it.

Lacks died soon afterward, but her cells kept growing and reproducing in the doctor's Johns Hopkins lab. As scientists recognized their surprising ability to grow indefinitely, the cells become hugely important to medical research. For the past 60 years, the HeLa cells have been used in experiments on topics as diverse as cloning, the effects of radiation, and the polio vaccine.

Lacks' family didn't find out about the immortal cells until the 1970s.

"It has been a long legacy within the family of 'research without consent,' and they've [experienced] quite a few privacy violations along the way," says Skloot.

Some of the HeLa genome has been available for years. The European researchers who sequenced the full genome initially claimed last week that no private medical information about Lacks or her descendents could come from the data they published online.

But right away other researchers began to refute that. They noted that although the cells have mutated, they still contain Henrietta's genes.

Read more:
Sequencing Of HeLa Genome Revives Genetic Privacy Concerns