HeLaFication: Henrietta Lacks Biological Appropriation and Exploitation Without Compensation

nbcnews |  Over the past six decades, huge medical advances have sprung from the cells of Henrietta Lacks, a poor, African-American mother of five who died in 1951 of cervical cancer. But Lacks never agreed that the cells from a biopsy before her death taken could be used for research. For years, her own family had no idea that her cells were still alive in petri dishes in scientists' labs. They eventually learned they had fueled a line called HeLa cells, which have generated billions of dollars, but they didn't realize until this spring that her genome had been sequenced and made public for anyone to see.  

On Tuesday, the National Institute of Health announced it was, at long last, making good with Lacks' family. Under a new agreement, Lack's genome data will be accessible only to those who apply for and are granted permission. And two representatives of the Lacks family will serve on the NIH group responsible for reviewing biomedical researchers’ applications for controlled access to HeLa cells. Additionally, any researcher who uses that data will be asked to include an acknowledgement to the Lacks family in their publications. 

The new understanding between the NIH and the Lacks family does not include any financial compensation for the family. The Lacks family hasn’t, and won’t, see a dime of the profits that came from the findings generated by HeLa cells. But this is a moral and ethical victory for a family long excluded from any acknowledgment and involvement in genetic research their matriarch made possible. 

It took more than 60 years, but ethics has finally caught up to a particularly fast-moving area of science: taking tissue samples for genetic research. Thanks to the efforts of a dogged journalist, some very thoughtful science leaders in Europe and the U.S., and an ordinary family willing to learn about a complex subject and then to do the right thing to help you and me and our descendants, a long-standing wrong has now been fixed.  

The news of the day is that the analysis of the genetic makeup of HeLa cells, the most useful cells used in all of biomedical research, has been completed. But the real news here is that medicine and science have finally done right by the person from whom those cells were taken—Henrietta Lacks.

HeLaFication: Who Owns Your Tissues and Your DNA?

In 1951, a woman died in Baltimore, America. She was called Henrietta Lacks. These are cells from her body. They were taken from her just before she died. They have been growing and multiplying ever since.

There are now billions of these cells in laboratories around the world. If massed together, they would weigh 400 times her original weight. These cells have transformed modern medicine, but they also became caught up in the politics of our age. They shape the policies of countries and of presidents. They even became involved in the cold war because scientists were convinced that in her cells lay the secret to how to conquer death.

"It was not like an ordinary cancer. This was different, this didn’t look like cancer. It was purple and it bled very easily on touching. I’ve never seen anything that looked like it and I don’t think I’ve ever seen anything that looked like it since, so it was a very special different kind of, well, it turned out to be a tumor." –Dr. Howard Jones, Gynecologist.