Author Rebekka Skloot Spoke at WWU

Jennifer Seifried is a first-year journalism student at Western.

The author of best-selling book “The Immortal Life of Henrietta Lacks” came to Western Washington University April 10, 2013.’ Rebecca Skloot spoke to students and members of the community about the realities of writing scientific narratives. She addressed her background as a scientist and her introduction to writing.

The Immortal Life is a true story about a forgotten figure in history who changed the lives of everyone that has benefitted from modern medicine. Henrietta Lacks was a poor black tobacco farmer who died of cervical cancer when she was 30. Her family did not know until decades later that the hospital had taken Henrietta’s cells and grown them in culture until they were reproducing about 6 trillion cells per week. Scientists exchanged these first immortal cells across the globe and made advances in vaccinations, antibiotics, and the understanding of DNA possible.

Skloot began the talk by recounting the book and adding details that did not make it to publication. She told how the Lacks family reacted to hearing about Henrietta’s cells with uneducated ears. Skloot said that when they were told the cells were immortal, the Lacks family believed Henrietta was being kept alive in a lab.

This distrust of doctors was not uncalled for, Skloot said. “The press was talking about strange things white scientists were doing to black people.” Deborah Lacks, Henrietta’s youngest daughter, was the most involved when scientists came to the Lacks family to tell them what had been going on. She did not understand what cell culture meant. Skloot said Deborah would ask the scientists if they could look at her mother’s cells and know what her favorite color was, or if she liked to dance.

A big question in The Immortal Life is about ethics. Was it right to take Henriett’s cells without asking? Was it wrong to not inform the family or compensate them for what science gained? Skloot said, “You can’t apply the ethics of today to actions of the past.” So, as wrong as it seems that the Lacks cannot afford healthcare when a member of the family helped create modern medicine, informed consent just did not exist at the time this took place.

“Science is often moving faster than ethics because science is about doing things you can’t imagine,” Skloot said. An example she brought up was how the HeLa genome (short for Henrietta Lacks) was recently published online. Skloot wrote to the scientific community hoping to open their eyes to what just happened; they had published the DNA of the Lacks family with no thought to repercussions. The genome was taken offline but now the Lacks are discussing the pros and cons of sending their family medical history around. Knowing why it was the HeLa cells that were able to reproduce would be valuable for more medical advancements, but it could be at the cost of privacy for the Lacks.

Ethics run a fine line in scientific discovery because there is always someone at the end being tested or giving samples for testing and questioning the morality of those samples usually occurs afterwards.

Skloot said she originally wanted to be a vet and it wasn’t until her last year of college that she discovered her love of writing. At her college, creating writing was considered a foreign language and she took the class to fill a requirement. Skloot said she decided to write a story on the vet morgue because that is where she was working and the question, “How many animals is too many?” was bothering her.

Even though she changed her mind about her major, Skloot encourages students by saying, “Letting go of a goal doesn’t mean you have failed, as long as you have another one in its place.” Actually, Skloot insists that it was because she came in without a background in journalism that she was able to approach the Lacks successfully.

The Immortal Life became Skloot’s passion. She says to students, “learn how to recognize your own curiosity and follow it.” In the same way, she says that science is about recognizing the things you did not expect to see and then asking questions.

Skloot’s mother, who attended her talk at Western Washington University, jokingly said it was the side of her daughter that did not give up on this book that was a pain when Skloot was a kid. It was because of this stubbornness that Skloot was so insistent on getting the story of the Lacks publicized. About trying to talk with Deborah, Skloot said, “I had to figure out why she was afraid of me, because that’s the real story.” Why was it that the children of Henrietta were so distrustful of white people asking questions?

After ten years of juggling the flow of information, teaching and researching, Skloot is focusing on her next steps as a writer. She is going back to the place she fell in love with writing, picking up her story about the veterinary practices in the university. Skloot is also working with the people turning The Immortal Life into a movie. Most importantly, Skloot says, she is continuing to help the Lacks family with the foundation made possible in the aftermath of publication.

Now, the decendants of Henrietta are able to have their medical needs covered and their education paid for. People outside the family who have suffered at the hands of medical research are also being taken care of. Skloot has been traveling for years hoping to inform more people about the issues raised in The Immortal Life and she says that overcoming stage fright and developing those communication skills were essential in making the events post-publication a success.

Western Washington University was Skloot’s last stop before plunging back into writing her next book. Skloot says that this first book will by no means be her last and her passion extends into other issues that she hopes to bring to light with future work.