Journalist Rebecca Skloot discovered this shocking truth about Lacks and subsequently wrote the book, The Immortal Life of Henrietta Lacks tracing both her life and her unique legacy. ESSENCE.com talks to Skloot about her new book, how vital Lacks was to modern science, when the family discovered their mother's role in the advance of medicine, and how Americans are benefiting now from Lacks after all these years.
ESSENCE.com: What can you tell us about Henrietta Lacks?
REBECCA SKLOOT: Henrietta Lacks was this poor Southern tobacco farmer raised on the same land that her ancestors farmed as slaves in Southern Virginia. She moved to Baltimore with her husband in the 1940's because there were more jobs up North, like working at the steel mills and the shipyard, during the war. When she was 30 she was diagnosed with cervical cancer. She actually found it herself. She went into Johns Hopkins hospital where she was going to get treated and they took a sample of her tumor without her knowledge. The cells they took went on to become the first immortal human cell line ever grown in culture and one of the most important things that ever happened to medicine. She had no idea.
ESSENCE.com: She has done a lot for modern science. Can you elaborate a bit?
SKLOOT: My book, The Immortal Life of Henrietta Lacks traces her life story. Her cells were used to test the polio vaccine to prove that it was effective so that they could release it to the public. They went up in the first space mission to see what would happen to human cells; they were exposed to atomic bombs, they were the first cells ever cloned; and the first genes ever mapped. Some of our most important cancer drugs came from her cells. You can fill many books just with the studies done on her cells.
ESSENCE.com: Scientists gave the cells the code name HeLa. Why?
SKLOOT: Giving the cells a code name was a form of basic bookkeeping. At that time, doctors were participating in a large cervical cancer study that required the collection of cells from any patient with cervical cancer who came to the John Hopkins Hospital in [Baltimore, MD]. Scientists were labeling the cells with the first two letters of a person's first and last name.
ESSENCE.com: Are there any ethical issues with the way the scientists labeled the cells using her name?
SKLOOT: The big ethical breach in her story is where they were not particularly careful with her name. Most Americans have cell tissues being used in research somewhere and we don't know it because our names aren't attached. The big thing with Henrietta's cells is the privacy violation. Her medical records were published at one point by a journalist so there are these questions about her privacy. There are also a lot of questions about whether you should take something from somebody without asking.
ESSENCE.com: Henrietta Lacks' cells became a source of enormous profit for scientists. How did this happen?
SKLOOT: HeLa cells were the first human biological materials ever bought and sold, helping to launch a multi-billion dollar industry. For example, today, anyone can go online and buy [HeLa] cells. There are banks full of these cells around the world.
ESSENCE.com: How did her family deal with this information?
SKLOOT: Her family did not learn about these cells until 25 years later. Her daughter Deborah had some really big questions. For instance, she worries whether her mother's soul is still alive in these cells. Can her mother rest in peace? Does Henrietta feel the physical pain when the scientists are conducting research on her cells? So it was kind of scary for her when she first learned about all the research being done. Deborah's brothers were very frustrated about it. To this very day none of Henrietta's children can afford health insurance.
ESSENCE.com: Which brings us to the next question about Henrietta's son asking a New York Times reporter, "She's the most important person in the world, and her family is living in poverty. If our mother is so important to science, why can't we get health insurance?" As the author of their mother's book, what do you think about his comment?
SKLOOT: It is particularly shocking when it comes to them because of all their mother's contributions to science, but there are so many people who are struggling in the same way.
As I travel across the country, I explain to people that there is a Lack's foundation to donate money for health care and scholarships, but I still feel a lot of people have benefited from Henrietta's cells. You have and so have I. In a lot of ways, the only people who have not in some way benefited from these cells is the Lacks family.