Family Consents to a Medical Gift Descendants of Henrietta Lacks Get Say on Immortal Cells That Led to 74,000 Studies

By Zimmer, Carl | Pittsburgh Post-Gazette (Pittsburgh, PA), August 8, 2013 | Go to article overview

Family Consents to a Medical Gift Descendants of Henrietta Lacks Get Say on Immortal Cells That Led to 74,000 Studies


Zimmer, Carl, Pittsburgh Post-Gazette (Pittsburgh, PA)


Henrietta Lacks was only 31 when she died of cervical cancer in 1951 in a Baltimore hospital. Not long before her death, doctors removed some of her tumor cells. They later discovered that the cells could thrive in a lab, a feat no human cells had achieved before.

Soon the cells -- nicknamed HeLa cells, using her name -- were being shipped from Baltimore around the world. In the 62 years since -- twice as long as Lacks' own brief life -- her cells have been the subject of more than 74,000 studies, many of which have yielded profound insights into cell biology, vaccines, in vitro fertilization and cancer.

In the journal Nature on Wednesday, a team of University of Washington scientists described the HeLa genome, which they recently sequenced. The project is a tour-de-force of DNA analysis, befitting the best-studied human cells in the world.

But the research is exceptional for another reason. Henrietta Lacks, who was poor, black and uneducated, never consented to her cells' being studied. For 62 years, her family has been left out of the decision-making about that research.

Now, over the past four months, the National Institutes of Health has come to an agreement with the Lacks family to grant them control over how Henrietta Lacks' genome is used.

"In 20 years at NIH, I can't remember something like this," Francis S. Collins, the institute's director, said in an interview.

Though the agreement, announced Wednesday, is a milestone in the saga of Henrietta Lacks, it also draws attention to a lack of policies to balance the benefits of studying genomes with the risks to the privacy of people whose genomes are studied -- as well as their relatives.

As journalist Rebecca Skloot recounted in her 2010 best-seller, "The Immortal Life of Henrietta Lacks," Lacks' cells were removed without her consent. She gave no permission for scientists to rear them.

Compounding that injustice, the scientists studying the cells and developing lucrative medicines from them did not inform her family or share any profits. Her family discovered that their mother was, in effect, scattered across the planet in 1973, only when a scientist called to ask for her children's blood to study genes inherited from her.

For the Lacks family, this March brought an intense feeling of dj vu. European Molecular Biology Laboratory scientists published the genome of a line of HeLa cells, making it publicly available for downloading. …

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