Recently, Rebecca Skloot, author of the major best-seller The Immortal Life of Henrietta Lacks, wrote an impassioned plea in the New York Times, urging people to support sweeping revisions to the Federal Policy for the Protection of Human Subjects, which is now under active review in the Department of Health and Human Services. These revisions are directed to the rules that now govern the collection and use of “clinical biospecimens,” which include all the organic substances that are routinely removed from the human body as a consequence of surgery, childbirth, or even normal testing. At first appearance, these materials look like waste products best disposed of in a safe and sanitary manner. But, in fact, they are invaluable in medical research to treat cancer and a host of other genetic and life-threatening diseases.

Without question, the most dramatic illustration of this process involves the so-called HeLa cell line derived from the cancer cells of Henrietta Lacks, an African American tobacco farmer who died of cancer in 1951 at the age of 31. When she was treated at Johns Hopkins Medical Center, her cancer cells were given to the pathologist Dr. George Gey. Gey found to his amazement that, unlike other cancer cells, Lack’s cells were immortal in that they could be cultured and reproduced indefinitely. Within three years of her death, her cell line helped develop the Salk polio vaccine. In the 65 years since Lacks died, about 20 tons of her cell line have been reproduced and distributed worldwide for medical research.

But just what did Lacks and her family get out of the arrangement? At the time, nothing. In accordance with the then standard practice, the Johns Hopkins researchers collected and used her cells without her knowledge or consent. In more recent years, she has received countless public honors for her contributions to medical research. But, at the same time, the many researchers who worked with her cell line collected substantial royalties from the patented cells and the devices developed with their assistance.