Who Owns the Rights to Your Cell Tissue?
In 1951 a woman named Henrietta Lacks died of an extremely aggressive form of cervical cancer in the "colored" ward of Johns Hopkins. When she first received treatment for the cancer, a sample was cut from her tumor and sent to a lab responsible for trying to culture human cells for research. Henrietta's cells began to grow, and unlike every other culture before them, they never died. The cells became integral to research on cancer, on the polio vaccine, the HPV vaccine and on many other medical innovations. They were sent into space, and shipped to labs around the world. Millions of dollars have been reaped not just from the outcomes of the research that used Henrietta's cells, but from the sale of those cells to labs. Henrietta's family were never informed of her "contribution," and were not aware that her cells were being used in research until 20 years later. How her cells were being used was not fully explained to them until the early years of this decade when a researcher contacted by Rebecca Skloot, the author of this book, took the time to show Henrietta's daughter and one of her sons around his lab and discuss the issue with them. Most of her children can not afford health insurance to pay for the drugs their mother's cells helped develop.
Obviously there's a lot of complications with the issue of provenance of tissues used in research, but at least at current time individuals must be notified if their tissues are going to be used for research purposes. Henrietta lived at a time when no such notification was required. Skloot does some background on other cases involving ownership of tissues, including one where the Supreme Court declared that patients could not assert ownership over tissues or fluids removed by medical professionals. This has led to the labs which collect these materials taking ownership in them, and an even more complicated legal landscape where genes for hereditary diseases are patented by the labs who develop the test for them, and those diseases can't be tested for without paying fees to the lab for each individual tested and other labs can't research the genes themselves to develop alternate therapies or medications. It's difficult to see how this is less of a barrier to the progress of medical research than it would be for patients to own parts of their own bodies.
What Skloot mostly does with this book, though, is delve into the history of Henrietta herself and the lives of her family. Skloot becomes close with Henrietta's daughter, Deborah, who is initially reluctant to talk to the author given previous attempt to extort money from the family or unflattering portrayals by others in the media. Eventually, Skloot gains the family's trust, and includes Deborah on many of her fact finding missions and even taking the time to track down the history of Henrietta's oldest daughter who died at the Crownsville insane asylum when she was only 15.
The Immortal Life of Henrietta Lacks is a good overview of the scientific research made possible by the HeLa cell line, and gives the reader a workable knowledge of issues facing the biomedical research community today. Where it stands out, though, is where it takes the extra time to really connect with the human element; Henrietta and her family are the main characters in this book, not the famous cell line. It's also a book that examines the darker side of research science, a field my mother worked in for many years and which I have deep respect for. However, just as in any field, is the few who spoil it for the many and the accounts of breathtaking arrogance by researchers using human subjects helps to make clear why consent forms are necessary today.
After her time with the family, Rebecca Skloot started the Henrietta Lacks Foundation to provide scholarships and funds to cover health care costs for descendants of Henrietta Lacks. Donations can be made here. As someone who has benefited from the many advancements Ms.Lacks unique cell line made possible, I've already got them on my list for the next time I've got a spare $20 to donate
This review is part of the Cannonball Read series. For more of Rusty's reviews, do check out her blog, Rusty's Ventures.