Who was Henrietta Lacks?

She was a tobacco farmer hailing from southern Virginia who acquired cervical cancer when she was 30 years old. Her doctor at Johns Hopkins took a sample of her tumor without her consent and sent it to their scientists who had been attempting to grow tissues in culture for many years without success. No one understands why, but her cells did not die.

Why are her cells so important?

Henrietta’s cells were the very first immortal human cells grown in culture, necessary to develop the polio vaccine. They were brought up in the first space missions to find out what would happen to cells if exposed in zero gravity. Several scientific landmarks have used her cells since then such as cloning, gene mapping and including in vitro fertilization.

Over the years, there has been a lot of confusion about the source of HeLa cells. Why?

The cells taken were given the code name HeLa, which stands for the first two letters from her name Henrietta and Lacks. Today, anonymizing specimens is a very important matter in doing research on cells. During the 1950s, it wasn’t something the doctors would worry much about. When a few members of the press were closer to finding Henrietta’s family, the scientist who’d grown the cells would create a pseudonym—Helen Lane—to send the media off track. Other pseudonyms, like Helen Larsen, were also created. The real name didn’t leak out until the 1970s.

When did her family discover about Henrietta’s cells?

After twenty-five years from Henrietta's demise, a scientist discovered during a research that many cell cultures seem to be from other tissue types, that included breast and prostate cells, were actually HeLa cells. It could float on dust particles in the air then travel along on unwashed hands and eventually contaminate other cultures. In the midst of that enormous controversy, a certain group of scientists was able to track down Henrietta’s relatives and took some samples with hopes that using the family’s DNA, they can map of Henrietta’s genes to identify which cell cultures were HeLa from those that were not. This would help straighten out the contamination problem.

Thus, a postdoc called Henrietta’s husband. However, he had a third-grade education, didn’t know what is a cell, and the way he understood the man on the phone call was: “We’ve got your wife. She’s alive in a laboratory. We’ve been doing research on her for the last 25 years. And now we have to test your kids to see if they have cancer.” It wasn’t what the caller said at all. The scientists assumed that the family understood. After that, the family plummeted into this world of research which they didn’t exactly understand, and it took over their lives.

How did they do that?

Mostly, for Henrietta’s daughter named Deborah, who never knew her mother; she was still an infant when Henrietta passed away. It had always been her wish to know anything about her mother however no one would ever talk about Henrietta. So when Deborah found out about this part of her mother still alive, she was desperate to comprehend what it meant: Did her mother got hurt when scientists injected her cells those viruses and toxins? Did her mother had a clone? Could any of those cells help scientists know about her mother, like if it would tell what her favorite color was and whether she liked to dance.

On the contrary, Deborah’s brothers didn’t appreciate this part about the cells until they discovered there was money involved. HeLa cells were the very first human biological materials to be ever bought and sold, and helped launch a multi-billion-dollar industry. Upon learning that people were selling several vials of their mother’s cells, and that there never was any share given to the family, Deborah’s brothers got very angry. They have lived in poverty for most of their lives, and surely many of them are not able to afford health insurance. One of her sons was even homeless and striving to live on the streets of Baltimore. So they launched a campaign to get an even share of what they felt were owed to them financially. Their lives were consumed in that way.

**From the book The Immortal Life of Henrietta Lacks which is available here.