The Immortal Life of Henrietta Lacks, by Rebecca Skloot, is the biography of the poor black woman whose cancerous cells were taken from her (without her knowledge or permission) and which subsequently became the first line of human cells to be successfully grown in vitro. Lacks died in 1951 but the HeLa line of cells, descended from the cancerous cells in her cervix, live on in labs around the world.
There is some science background/history in this book, but it is primarily the story of Lacks and her family as well as a story of the history of medical ethics. Shockingly, as recently as the 1950s, doctors frequently withheld critical information (such as, oh, a diagnosis) from their patients, for fear of upsetting them. Black patients like Lacks were the least likely to be given all the facts. Given the lack of respect in the doctor-patient relationship then, it does not seem quite so surprising that when Lacks went to Johns Hopkins for cancer treatment, doctors dared to take and store samples from her tumor for use in experiments without even asking for her consent.
The discovery that HeLa cells were actually capable of reproducing in culture medium (outside of the body) sparked a revolution in medicine. Suddenly you could perform experiments on human cells without having to perform experiments on a human. HeLa became part of the standard arsenal for research studies involving human cells. HeLa cells were used to test the first polio vaccine; they have been used to test the effects of carcinogens, drugs, zero-g environments, and more on human cells. By 2009, research done on HeLa had led to the publication of some 60,000 research articles.
And yet, for about twenty years after Lacks's cells were taken from her, by which time they were already routinely in use in labs around the world, Lacks's children had no idea that any of that was happening. Understandably, they became quite upset and paranoid when they finally learned what was going on. The irony of this story is that while Henrietta Lacks's cells have produced scientific research of untold aggregate value, her descendants are still too poor to afford decent health care.
In researching for this book, Skloot definitely crossed the traditional boundary between author and subject. She worked closely with Henrietta's youngest daughter, Deborah, and helped her to learn about her family's history, unravel what it was that had actually happened to her "mother cells," and assuage many of her concerns. Lacks's descendants were relatively poor and uneducated, and this book could easily have crossed the line into sounding patronizing, but it doesn't. Skloot has done an admirable job in not just identifying but creating the human story here.
This book is both thought-provoking and captivating; recommended.
Review ends here; only moderately thought-out speculation begins. IANA doctor or medical researcher.
Reading The Immortal Life of Henrietta Lacks, you can see that the medical institution has come a long way since the 1950s, but as a society we still don't have a lot of the answers for how to deal with the use of donated human biological products (tissue, usually) in medical research. One positive change is that the idea of requiring "informed consent" is now widely recognized and standardized. But patients do not have a great incentive to actually donate their biological products to research, because the vast majority of samples are worth approximately nothing, except as part of a larger collection, and donors receive no other benefits. (It doesn't help that in Moore v. Regents of the University of California the Supreme Court of California ruled that once a biological product is taken from your body, it is no longer yours; therefore, in order to profit from its use you would have to have the extraordinary foresight to come to some agreement with the hospitals/researchers before you donated the sample.)
There are a number of proposals to compensate donors of biological products, e.g. with reduced health care costs, or money paid out of a pool funded by pharmaceutical companies. I think some of those are good ideas. But what may be interesting to try here is some sort of analogue to a Creative Commons license: something drafted by lawyers, similar to all the pre-written legal documents or software licenses you can get today, that would provide various stipulations that ensure that research and IP derived from a patient's particular biological sample meet some standard of public accessibility. As Skloot points out, what many donors really want is not remuneration (especially since only an exceedingly small fraction of single biological samples are worth anything anyway) but the knowledge that the fruits of research done on their donations are available to the public and to other researchers, rather than staying in some freezer because no one is going to pay some exorbitant fee for an unknown sample. HeLa itself revolutionized medicine because it was widely distributed, and that only happened because it hadn't occurred to anyone to patent cell lines in the 1950s.
Donors are going to have to be the ones to fight for the public interest, but they don't really have any leverage unless they show strength in numbers.