When Your Body Is Donated To Science, Involuntarily
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Signing that form at the DMV to state that you volunteer to be an organ donor is a generous act that literally provides a miracle to another person who needs a new heart, lungs, liver, or other vital organ. Donating your body to science so that doctors in training can learn anatomy through an intimate exploration of your preserved body after your death takes that generosity a step further.
But did you know that when you give up a sample of your body, such as when you undergo a biopsy, have a surgical procedure, or donate to a sperm bank, not only are you giving your body parts away to science, but that it is legal for others to profit from your tissue?
This concept, that we do not own our own cells once they are removed from our bodies, is the issue that is explored in a recently published book, The Immortal Life of Henrietta Lacks (Crown Publishers), by science journalist Rebecca Skloot. Ms. Skloot covers the fascinating true tale of what happened to tumor cells once they were removed from Henrietta Lacks, pictured above, who died of a very aggressive form of cervical cancer in the 1950s. Without the patient's consent and without her family's knowledge until an accidental discovery decades later, Ms. Lacks' tumor cells have been propagated in perpetuity to this day. They were the first set of cells that have been kept immortal in cell cultures. They have been used for a wide variety of groundbreaking scientific and medical research, including in the research and development of treatment for the flu, infertility, the polio vaccine, AIDS, leukemia, among other diseases. The cell line, named HeLa after its source's name, has been shipped to laboratories around the world for the purpose of research. The Johns Hopkins researcher, George Gey, who was the scientist to first grow Ms. Lacks' cells, did not profit from having done so. But since then, HeLa cells have been commercialized, and others have made profits in the millions from selling them. All of this was done without the knowledge or consent of Ms. Lacks' family.
This is legal. When you go in for that procedure, it is standard now (but was not even a consideration in Ms. Lack's lifetime) for patients to sign a form giving informed consent that their tissue samples, once removed, may be used for research purposes. A few important legal cases have reinforced the legality of this practice, and of the fact that you have no right to share in any profits generated from the sale of cells propagated from your tissue. Two important cases were cited by R. Alta Charo, JD, in the New England Journal of Medicine in 2006,
"the Moore case of 1988 (concerning rights to share in commercial gain from derivatives of tissue taken without proper informed consent) and the Greenberg case of 2003 (concerning property rights in tissue and genetic information derived from patients' tissues), courts found that state law provided little basis for granting patients a property interest in their voluntarily donated, excised tissue."
Henrietta Lacks' legacy to medical science is invaluable, but she contributed involuntarily. Compared to when she died, you have a lot more control these days over what happens to your body parts, through informed consent. The intriguing issue that remains is that once you give that consent, you no longer own the cells that you have signed away. This brings up legal, ethical and philosophical questions.
© Linda Shiue, 2010
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Comments
This story is always presented in the ethics classes that biomedical researchers take. I think today this would never be possible, to take someone's cells and use them so widely without patient consent.
The Wired article has a great graphic showing the widespread impact HeLa cells have had...
Great post! Rated!
Now, as for the little boy's eyes that were removed without consent from his parents....that's just plain theft. That being said, we should all sign our donor cards with big, bold letters and joyously give away what we will no longer need. I hope they squeeze me like a sponge.
R
PS: "Your bill for spleen removal is $12,653. 07, not including hospital costs and anesthesiologist, which will be billed separately. Continue to have a nice day."
As for organs after I die, they can have them all (but I'm Scottish so they better thoroughly check the liver).
Still they were from her body and there should be some consideration owed to those who donate body parts for research or implantation. Consider it like owning a bit of land where there is oil found underneath - you don't build the rig or bring the manpower and skills, but its' still your land and they pay you for it.
~
The next time, I will modify the darned thing and demand 20% royalties. They probably won't even notice the change!
medical science. I hope that my substantia nigra (I have Parkinson's) is studied by an army of scientists. Wouldn't it be wonderful if my cells could lead, even indirectly, to a cure. Thank you for this excellent post.
Its easy to see how a minor bureaucratic slowdown led to stolen eyes not being returned.
One of the questions about the Lacks cells is, did they help research because their sale provided funding to labs looking for cures to cancer?
Do you know what happens to tissue voluntarily stored in banks if the owner(s) die? E.g. cord blood, frozen ova or embryos, and sperm? Is it automatically destroyed, or can you offer to donate it if there is no one to claim it?
And if someone, somewhere makes a trillion dollars off of my body garbage, then so be it.
Of course, the idea of being charged god knows how much money myself when things like that happen make me think that I should be eligible for SOME kind of discount.