I think the idea of someone doing anything to your body (regardless of whether it is still attached to you) without your permission is a bit disturbing. I know this is a bit at odds with my views about what happens to my body after I'm dead as far as organ donation and then disposal of my remains, but organs typically don't last forever and disposal means it is trash and theoretically no one should want it. Taking tissue samples from my body and using them in ways that I, or the donor, have no knowledge of is and should be highly objectionable to everyone involved.
Curing cancer? This I have no problem with. Finding a cure for cancer and charging people thousands of dollars for it when you know only a small percentage of the population can afford it (especially if it costs pennies to produce)? I am not as okay with. Using my tissue samples to develop biological weapons? I am morally opposed to.
The chances of this actually happening to my cells are probably pretty slim. But the medical world probably does have my samples on file somewhere. I donate blood, I am a woman and have therefore forcibly donated cervix cells in order to obtain access to birth control, and I've had a biopsy on my thyroid. I have never received confirmation that those samples were destroyed or no longer exist, and now that they are outside of my body they are no longer "mine."
It is not so much that I want to profit from discoveries made from my cells. I believe that everyone has an obligation to progress areas of science that will make critical improvements in the quality of life. I do believe in making those benefits available to as wide a number of people as possible. There is no humane/Christian/compassionate argument for allowing another person to live in suffering in order to make a profit. I am not arguing for free medicine; doctors, health insurance companies, pharmaceuticals, and test subjects and specimen providers should be fairly compensated for their contributions to medical science.
But how "fair" it is for CEOs of pharmaceutical companies to make their high-end salaries when they are not so much in charge of curing cancer as they are in running the company that produces the cure for cancer and then figuring out how much money they can make off of it? There is something deeply, deeply wrong with viewing the healing of the sick in this manner, just as surely as it is wrong to take something from someone's body and then state that they have no claim over what happens to it. This would be a lot like an author publishing her book and then immediately losing all rights to it. While she has to suffer the slings and arrows of praise and criticism alike, at least she doesn't have to do so without a paycheck attached to her efforts. In the case of Henrietta Lacks, it was if they chopped up her novel and spit it out in a million variants. Not only was she never fairly compensated for each variant, she wasn't even asked if that variant could exist in the first place.
Let's make this personal: how would you feel if your cells were used to cure cancer? No objections there, probably. But what if they were used to make human clones? What if they were used to make designer babies? What if they were used to create a biological weapon to wipe out people of a certain ethnic background?
I have news: you don't have that right. And if you have ever given any tissue samples, someone probably has your cells and has every legal right to do those things (although hopefully most of those would not reach the human testing stage).
An excellent review can be found from another bloggin' librarian over at ricklibrarian.
LibsNote: Copy downloaded from my public library. Ask your local library if they carry eBooks!
Oh, if you prefer fiction, but still want to read about some of the issues raised by Skloot, Michael Crichton's novel Next is actually really fascinating, pseudoscience aside.
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