What kind of control should individuals have of tissue samples from their own bodies?
Henrietta Lacks is arguably one of the most famous individuals in this debate. In 1951, a scientist at Johns Hopkins Hospital in Baltimore created the first immortal cell line with a tissue sample taken from a young black women with cervical cancer. That young woman was Henrietta Lacks. The cells taken from her, called HeLa cells, quickly became invaluable to medical research. Henrietta Lacks never knew that her doctor had taken a piece of her tumor without her consent, and she and her family received no benefits or recognition for her contribution to the medical science field. 25 years after her death, Mrs. Lacks' family found out what was being done with the cells, and launched a campaign to get some of what they were owed financially.
A books was published in 2010 by Rebecca Skloot, The Immortal Life of Henrietta Lacks, that does an excellent job exploring the story. Part of the proceeds of her book went to set up the Henrietta Lacks Foundation whose mission is to provide financial assistance to individuals who have made important contributions to scientific research without personally benefiting from their contributions, particularly contributions made to research without their knowledge and consent.
Do we own our own tissues after they are removed from our body? If so, then it seems reasonable that we should expect to have some say in how they are used and have the right to demand payment when a profitable discovery derives from them. Or, if we can't treat tissues samples from our own body as property, what other rights do we have, and kinds of obligations do researchers have to tissue donors?
For more information, see:
Skloot, Rebecca. The Immortal Life of Henrietta Lacks. New York: Crown Publishers, 2010.
Troug, Robert D., Aaron S. Kellselheim, and Steven Joffe. "Paying Patients for Their Tissue: The Legacy of Henrietta Lacks. Science Magazine. 337(6090) 37-38. July 6, 2012. http://www.sciencemag.org/content/337/6090/37.full?sid=b30262f0-c4d4-44e9-a4e4-2515e9234841
Ziellinski, Sarah. "Henrietta Lacks' 'Immortal' Cells". Smithsonian.com. January 22, 2010. http://www.smithsonianmag.com/science-nature/Henrietta-Lacks-Immortal-Cells.html