Who Owns Our Cells and Our Stories?
In an earlier post, I promised to write about the keynote speech, Rebecca Skloot did at the Women and Science Networking Event at ScienceOnline09. The speech was on “Women, science, and storytelling: The immortal life of Henrietta Lacks (a.k.a. HeLa), and one woman’s journey from scientist to writer “.
It was an interesting and disturbing presentation and I've been thinking about it a lot. Henrietta Lacks was a poor, African American woman who, in 1951, was dying of cervical cancer. Before she was treated with radiation, a sample of her cancer cells was taken. These cells, called the HeLa cells, continue to be used in labs the world over. Neither Mrs. Lacks, who died soon after, nor her family knew the cells were taken and nor did they know the huge impact those cells had on medicine.
Quoting from Skloot's 2000 article in the Johns Hopkins Magazine:
There are at least two issues that cases like Mrs. Lacks's raise," says Ruth Faden, executive director of the Johns Hopkins Bioethics Institute and the Philip Franklin Wagley Professor of Biomedical Ethics. "One is the question of consent, and the other is what, if anything, is morally or legally due to a person if something of commercial value is developed from their cells.
Faden went on to say
In terms of public policy, we're real clear that you can't buy and sell organs, that's illegal. But you can sell blood. You can sell human eggs and sperm. But you can't sell your kidney. And apparently, you can't sell your cells, you give those away.
So unlike Mrs. Lacks, you own your cells but like Mrs. Lacks you can't sell them. If you give them away, then they can be sold but you don't get any of the money and unless you've signed a very unusual contract, you have no say as to how those cells are used or who uses them. So today we sort of own our own cells; but if we want to try to make money off of them, we had better be scientists with a lot of equipment or have the money to hire others to do it.
But what about our stories? For the Lacks' family, history does seem to be repeating itself. Mrs. Lacks' daughter, Skloot explained, worked intensively with Skloot to tell her mother's story. Citing journalistic ethics, Skloot chose not to pay the family. From an ethnical, journalistic perspective, you can give your story away but they can't pay you for it. So today, like the cells, we sort of own our own stories; but if we want to try to make money off of them, we had better be writers with a lot of contacts or have the money to hire others to do it.
For both our cells and our stories there has to be a better way.