I am currently reading my way through a long list of science fiction and fantasy titles. (http://www.npr.org/2011/08/07/138938145/science-fiction-and-fantasy-finalists if you are interested in the list).
Henrietta Lacks, as HeLa, is known to present-day scientists for her cells from cervical cancer. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells were taken without her knowledge and still live decades after her death. Cells descended from her may weigh more than 50M metric tons.
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, her small, dying hometown of Clover, Virginia — wooden slave quarters, faith healings, and voodoo. 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.
A book like this makes me realize how important education in general and particularly science education is. Today’s science is yesterday’s magic—for those who don’t understand science, it can seem like very frightening black magic. The story of Henrietta Lacks explores the intersection between science, research, education, capitalism, civil rights, and consent.
The major question implicit in this book is whether we have any claim to our own cells after they have been removed from our bodies. Is it ethical to take “discarded” cells—those left over after medical procedures—and do research from them and potentially make money from either the cells or the research. This issue gets us down somewhere in our irrational subconscious—after all, we all “know” enough about voodoo and black magic to know that curses require hair, nail clippings, blood, or other bodily secretions in order to be effective.
In many ways, the story of the HeLa cell line traces the history of medical research in the US (and to some extent, other countries), evolving from the exploitation of vulnerable people towards the concept of informed consent. It also traces the history of an African American family, liberated from slavery, but not from poverty and deprivation.
The current distrust of science has some real roots in situations like these, where people were used without their knowledge for experimental purposes. But the lack of scientific literacy in the general population helps with the proliferation of conspiracy theories and the prevalence of medical quackery. Witness all the “miracle cures” that people buy into. One older lady that I used to work with was always pouring money into some miracle weight loss scheme or another—it didn’t seem to occur to her that if the method actually worked, it would be front page news on Time magazine, not some obscure ad in the back of a newspaper.
We have to seriously question ourselves and our politicians about the quality of our educational systems. Are they being funded? Do we have enough teachers? Can poor children hope to get education equal to that of rich children?
As my grandfather used to say, no education is wasted.