Our book group recently read The Immortal Life of Henrietta Lacks by Rebecca Skloot.
If you aren’t familiar with the book, it’s about cells taken from Henrietta Lacks’ cancer in the 1950s, which turned out, unlike most cells, to have a remarkable ability to reproduce. HeLa cells have been used to do research on everything from polio to AIDS.
Companies made millions producing and selling HeLa. It is estimated that 50 million tons have been created and 60,000 scientific articles written about research done with them.
Henrietta Lacks was black. She was a charity patient at Johns Hopkins and died from her cancer. No one asked for permission to use her cells; no one told her family, and almost no one remembered who she was until Skloot began her research and found Henrietta’s children. They received nothing from the use of their mother’s tissue and grew up abused and in poverty.*
Things are better now, or so we’re told. We sign a form agreeing that tissue removed from our bodies can be used for research. It’s part of a page of tiny print most of us don’t read. This is considered “informed consent.” After cells leave our bodies, they are no longer ours and there is no way to compensate a person whose tissue turns out to be valuable—as Henrietta Lacks’ was.
In the book, Skloot quotes Christoph Lengauer, a researcher at Johns Hopkins, speaking to two of Henrietta’s adult children: “You should get the money. At least some of it. Why not treat valuable cells like oil. When you find oil on somebody’s property, it doesn’t automatically belong to them, but they do get a portion of the profits.” (p. 267)
Here are my questions:
With our present knowledge of DNA, any cell can be traced back to its owner. Why can’t people (or their families) be compensated when the use of such cells becomes profitable?
Rebecca Skloot was more than a disinterested observer; in doing her research, she became almost a part of the Lacks family. Why didn’t she help them find a good lawyer?
* In the past few weeks, Henrietta Lacks’ entire genome was read and published without the knowledge or consent of her family.