I just finished reading The Immortal Life of Henrietta Lacks by Rebecca Skloot and I thought it was interesting enough to warrant a blog book review.
“Henrietta Lacks, as HeLa, is known to present-day scientists for her cells from cervical cancer. She was a poor Southern tobacco farmer…, yet her cells were taken without her knowledge and still live decades after her death…HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions. Yet Henrietta Lacks was buried in an unmarked grave.
The journey starts in the “colored” ward of Johns Hopkins Hospital in the 1950s...Today are stark white laboratories with freezers full of HeLa cells, East Baltimore children and grandchildren live in obscurity, see no profits, and feel violated. The dark history of experimentation on African Americans helped lead to the birth of bioethics, and legal battles over whether we control the stuff we are made of.”
For non-fiction haters, while the book is non-fiction, it isn’t technical or heavy on the science despite being a science themed. But for the non-fiction lovers, if you hate when authors inject themselves into the story, this book is not for you. It is very much the story of the journalist discovering and telling the story of Henrietta Lacks and family.
The book isn’t perfect, I would have liked some topics to have been discussed more and I would agree with the critics who say that while she claims to have better intentions than all the other journalists, it may have been that she was just the pushiest or contacted them at the right time when they wanted to tell their story. However, all that aside, it’s a great book.
Although the entire book is fascinating (it’s not just about Henrietta; it’s also about her family, abuse, education, privacy, mental health and treatment, and racial tensions), I thought the last section about whether we have a right to our cells once they leave our body was the most interesting.
While doctors now require full consent to take any tissue samples, once the consent is given, we relinquish control of how that tissue is used in the future. Hospitals keep most (if not all) of the samples taken and they can be held for an indefinite amount of time. It may seem pointless but it was helpful in 2009 when tissue samples from people who died in the 1918 flu pandemic were used to aid the development of the H1N1 vaccine. Though it seems that many institutions have started requiring consent for research, there is no law stating that it’s necessary.
And really, most people don’t have a problem with having their tissue used for research but when money gets involved, it can get a little trickier. Right now, if you have a tissue sample taken and it shows that you have cells that are immune to the common cold, which then leads to someone developing a cure for the common cold, which is sold for 10 billion dollars, you’re share of that profit would be zero dollars. The only way to get around that would be to be aware that you have the magical cells that everyone wants and demand your cut of the profits ahead of time (the book discusses one man who did just that).
Another problem that people have is if the tissue is being used for research you might not ethically support. If you didn’t support vampires, you would not appreciate your blood being used to support research into developing a line of super-human-vampires.
All the information in the book was US based, but it seems it is no different in Canada. In June this year, a Canadian court ruled “thathuman tissue removed from the body for diagnostic medical tests is personalproperty that belongs to the hospital…” They were basing their ruling on the US court case so unless anyone knows different, I’m going to assume that Canada does not have any better tissue-right laws than the US.
On the flip side of the argument, researchers need tissue samples to work with and it makes people more comfortable giving samples if they know they’ll be anonymous. Right now when you give a sample, it would take a lot of work for the researcher to be able to figure out the original source. The woman at pottery class who works on CF samples told me she can’t even know the age of person despite the fact that she is doing research on aging and infection for those with CF.
So if you like a good story about a family who was wronged by the medical community, a healthy discussion about medical ethics, along with a heart breaking side-story of the institutionalization of African Americans with mental health conditions in the 50s, this book is for you.