When Your Body Is Donated To Science, Involuntarily

By Linda Shiue

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.