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Ethics in medical research to be topic of county bar forum
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Rebecca Skloot, author of "The Immortal Life of Henrietta Lacks," will speak at the Allegheny County Bar Association event Wednesday.
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As an undergraduate at Colorado State University, Rebecca Skloot was immersed in the study of biological sciences with the goal of becoming a veterinarian. In her junior year, she enrolled in a writing class to satisfy a liberal arts requirement -- and that course changed her career path.
After the instructor read the papers she submitted that described her experiences working in a veterinary morgue and doing research, he counseled her to consider the field of science writing because she had a knack for communicating the complexities of technical data in a clear style that could be understood by non-scientists.
Suddenly, Ms. Skloot was seeking graduate programs in creative nonfiction and landed at the University of Pittsburgh, where she began the research and writing for what eventually became her best-selling book, "The Immortal Life of Henrietta Lacks."
The book, published in 2010 and released in paperback in March, has sparked wide interest and debate about the legal and ethical ramifications of how human cells and tissues are used in scientific research.
Ms. Skloot is scheduled to discuss the book and those issues Wednesday when she returns to Pittsburgh for an event presented by the Allegheny County Bar Foundation Zittrain Forums on Law and Policy. She will read from the best-seller, provide an overview of the story and answer questions at the lunchtime forum at the Fairmont Pittsburgh, Downtown.
Henrietta Lacks was a poor, black woman in Baltimore who in 1951 sought treatment for cervical cancer at a clinic at Johns Hopkins Hospital. During an exam, a gynecologist took a routine sample from a tumor growing inside her and sent it to a Hopkins laboratory where the cells from the sample made history.
Scientists for years had been trying unsuccessfully to grow and reproduce human cells outside of the body. But Mrs. Lacks' cells were different. They survived, continued to reproduce and later were used for research of cancer, polio, Parkinson's and numerous other diseases. They made their way to labs around the globe, and medical companies also used them for drug development. Mrs. Lacks, who died within a year of her cancer diagnosis, never knew the cells were doing amazing things outside her body. Her family also was unaware of her contribution to science until decades later.
Although they were dubbed HeLa cells (for the first two letters of Henrietta and Lacks) in the Hopkins lab and have been known by that name among scientists and biology students for generations, no one in the scientific community knew much about Henrietta Lacks until Ms. Skloot became curious about the woman behind the immortal cells.
The author learned about HeLa cells in a high school biology class. "I was obsessed; I wanted to know about her and her family," she said last week in a phone interview from her Chicago home.
Among the requirements for her master's degree at Pitt was a book-length manuscript. Her initial idea, she said, was to compile "a collection of essays about forgotten women in science."
She figured Mrs. Lacks would be the first essay subject and she had a couple of other women in mind. But after beginning her investigation of what happened to Mrs. Lacks and her family, she knew that story would fill a book.
In between her master's course work at Pitt, Ms. Skloot traveled many times to Baltimore and southern Virginia to locate and connect with the Lacks family. They originally were Virginia tobacco farmers, but many in the clan, including Henrietta's husband, had migrated to Baltimore to work at Bethlehem Steel's Sparrows Point plant. After locating the family and persuading them to speak to her, Ms. Skloot realized she could not finish the book in time for graduation, so she left Pitt when her classes were completed and kept writing until part of it was ready to submit as her master's thesis. She got her degree in 2006 and kept working until the book was ready to publish last year.
She organized her own book tour to promote it because she figured the story of a poor woman's cells being used without her or her family's consent for ground-breaking scientific research would capture an audience.
"My goal was to put it all out there and say, 'OK, discuss this.' I don't think it's my place to say whether it's [right or wrong] about making money on these cells. I felt it was important to tell a balanced story about science and about the well-meaning human beings behind the science and the samples. It's a complicated issue."
Julie Meder, an attorney who specializes in intellectual property at the Webb Law Firm, Downtown, said the book raises timely questions about who owns biological material and who profits if it's commercialized.
"In 1951, scientists just gave [the cells] away. No one realized the power of genetic information. Fast forward to 2011 and now the market and the technology has caught up. It could be of value to the owners. These amazing cell lines have provided a platform for disease treatment."
Another legal and ethical issue is privacy once human cells are released for research, Ms. Meder said. "What begins to give the general public pause is whether someone else is going to know about my genetic code and who is going to own my genetic code? The privacy issues are beyond just the commercial issues."
Since completing the book, Ms. Skloot is working on a version adapted for middle school students and is a consultant to a movie version being produced for HBO. She also is founder and president of the Henrietta Lacks Foundation, which raises money to assist the Lacks family with health care and education costs.
"Its mission as a whole is to help people in financial need who were used for research without their consent," she said.
To register for the event, go to www.acba.org or call 412-402-6681.
First Published May 2, 2011 12:00 am
