One of the required readings for the Class of 2016 was The Immortal Life of Henrietta Lacks by Rebecca Skloot. I just finished the book after an aunt gave a copy to me in January. Henrietta Lacks, an African-American living in poverty near Baltimore, Maryland, was treated in Johns Hopkins Hospital for cervical cancer and syphilis. Right around her death at age 31, her doctors removed a bit of the tumor, the cells of which regenerated powerfully when grown in culture. Later the doctors removed tissue from other tumors in most places of her body; the combined cells grown in culture from these tumors became HeLa, the first constantly regenerating line of human cells ever. Research completed with HeLa dove into HPV (212), AIDS, Ebola, and spiritual healing (196), and linking traits with chromosomes (142), in the process standardizing cell cultures and helping launch now-huge biotech companies. The largest problem, however, continues to be that no informed consent came from nor compensation went to the family of Henrietta Lacks.
The legal, ethical, and scientific narrative around patients’ rights to their tissues intertwined through the latter half of the story with a fuller discussion of the current situation in an appendix. The debate revolves around two issues: the capitalist reality of much of science (and therefore patients demand the right to commodify themselves) and consent. One side uses the logic that completely informing patients of research intent and procedures would hinder scientific advance. One heavily criticized example was Dr. Chester Southam, who, for reasons of “phobia and ignorance” (130), didn’t inform over 600 cancer and non-cancer patients that he injected them (1954-1963) with a solution of cancerous cells to “find undiagnosed cases of cancer” (130). (He told them he was checking them for cancer.) Another side notes that the genetic information inherent in cells negates the possibility of anonymity (187). A frequent argument is that research exposes these “anonymous” cells in culture to “radiation, drugs, cosmetics, viruses, household chemicals, and biological weapons, and then stud[ies] their responses” (316). Without sources, I’d guess such studies appease animal rights groups, FDA clinical studies, and the like.
Here, then, is my dilemma. As noted previously, I went to Mayo Clinic in Minnesota and, after various blood tests, was prescribed an antibiotic for symptoms that hit during Egypt. Ok. Now, about a month after finishing my prescription, Mayo sent me, like every other Mayo patient, a request for my consent to use my medical history in continuing research. I am allowed to check up on studies using my data in anonymous groups, but I will not receive compensation. There was no information as to what exactly my information will be used for, nor any guarantee that any residual blood from blood tests was thrown out. In fact, “the stuff [the patient] leave[s] behind doesn’t always get thrown out. Doctors, hospitals, and laboratories keep it. Often indefinitely” (315). Mayo is required to send two such request forms to the patients, and if the patient leaves both unanswered, after a specific period of time has passed, Minnesota law allows Mayo to assume consent was given. Such research on cells from a variety of people is the single best way to advance medical knowledge. The question: do I give consent, deny consent, or imply consent by ignoring the forms?