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Lacks family, NIH reach agreement on HeLa cell genome data

On Jan. 29, 1951, a poor black woman from Baltimore walked into Johns Hopkins Hospital, complaining of pain in her abdomen. Henrietta Lacks died within the year, but, unbeknownst to her family, cells from the cancerous tumor that ended her life continued to live on in research labs around the world.

The cells, known as HeLa in the science world, were extracted without Lacks' permission. They were studied and dissected and propagated for decades before her children learned that they even existed. After the story gained international attention as the subject of the New York Times best seller The Immortal Life of Henrietta Lacks, many questioned the ethics of using the cells.

The debate escalated earlier this year, when German researchers published the first sequence of the full HeLa genome. Many in the scientific community spoke out, saying that releasing genome information could inadvertently release personal information about Lacks' family. The data was removed from public access, but the questions remained, spurring the National Institutes of Health (NIH) to work with the family to come to an agreement on the future use of the HeLa cell line's genome information.

After three face-to-face meetings over the past four months, the two parties reached an agreement.

On Wednesday, the NIH announced in the journal Nature that the full genome of the HeLa cells will be mapped, and the NIH and Lacks family will allow controlled access to a limited number of biomedical researchers. A panel of four NIH researchers and two Lacks family members will review research proposals for access to the genome data.

"Just like their matriarch, the Lacks family continues to have a significant impact on medical progress by providing access to an important scientific tool that researchers will use to study the cause and effect of many diseases with the goal of developing treatments," said NIH director Dr. Francis S. Collins, in a press release.

As the largest human cell line in the world, HeLa cells are credited with leading to the development of vaccines, cancer treatments, in vitro fertilization techniques and other profound medical advances.

"The HeLa genome is another chapter to the never ending story of our Henrietta Lacks," said Lacks family spokesperson and Henrietta's granddaughter Jeri Lacks Whye. "She is a phenomenal woman who continues to amaze the world. The Lacks family is honored to be part of an important agreement that we believe will be beneficial to everyone."