This is a story about ethics, informed consent, and the control each of us has over our own cells. This is the story of HeLa, the cells taken from Henrietta Lacks, without her knowledge or consent.
This story is told in a book published earlier this year by Rebecca Skloot. It’s a complicated story about the ethics of human research and what researchers and companies owe those who participate. It’s about the role of minorities in research, especially during the time of the infamous Tuskegee syphilis experiment. (Check out the article on Clinical Trial Diversity in the June 2010 issue of PharmaVOICE.)
HeLa are the first immortal cells grown in culture — and then later cloned. They are still alive today, more than 60 years after Henrietta’s death. They were vital for developing the polio vaccine, they led to advances in in vitro fertilization, and they helped researchers understand cancer and viruses.
Modern drug research owes much to the HeLa cells. It was the culturing method and the standardization of that method developed by those at Johns Hopkins in the early 1950s that led to the ability to replicate cells. And it was the HeLa cells that enabled researchers to do work that would have been impossible to do in humans. HeLa helped to advance cell cloning, stem cell isolation, and even human genetics. Henrietta’s cells have led to the birth of several industries, including cell production and manufacturing.
Yet Henrietta and her family, poor Southern tobacco farmers, were unaware that her cells were used for research, and they have received no part of the profit that many companies have made over the years. And few people beyond Johns Hopkins knew of Henrietta or the HeLa cells.
I had some down time recently thanks to a computer crash and picked up “The Immortal Life of Henrietta Lacks,” which tells the entire story — through the eyes of Henrietta and her family — of how these cells came to become immortal. Ms. Skloot tells the story of the researchers and the family of Henrietta through interviews, medical records, and journal entries. Ms. Skloot’s book brings to life the people behind the research, something we don’t often think about when we open that prescription bottle.
To learn more about the book, visit http://search.barnesandnoble.com/The-Immortal-Life-of-Henrietta-Lacks/Rebecca-Skloot/e/9781400052172/?itm=1&USRI=Henrietta+lacks