That is, this is about what happens when poor black people meet modern science and scientists; we know who starts off one up and who stays one down. The book chronicles that relationship as first observed and then felt intimately by a white, well-educated, science journalist -- and it works in the sense that readers of similar background to the author's can journey through that turf with Skloot. Readers will get a glimpse of the chasm of race, class and educational privilege that separates their world from that of generations of Black people in this country. Along the way, we can also learn a lot about our high-end science and its ethics.
One of the episodes that made the strongest impression on me concerned cancer research in the mid-1950s. Perhaps because my partner is an ethicist who serves on an Institutional Review Board assessing scientific experiments, I found this tale shocking:
All those who were injected grew tumors at the pinprick sites. Most, but not all, of these resolved on their own. Some Southam removed surgically. Having collected his results from cancer patients, Southam went looking for healthy subjects into whom to inject Henrietta's cancer cells.
No patients died from these experiments, so the doctor didn't feel he was doing anything wrong. He was advancing science; if patients had been told they were being shot up with live malignancies, he feared they would not have let him do it.
Fortunately, three young Jewish doctors, grimly aware of the Nuremberg trials' verdicts condemning Nazi doctors for experimenting on captive human subjects, blew the whistle on Southam and the medical establishment that saw nothing wrong with his activities. The experimenting doctor received no more than a slap on the wrist, suffering no professional penalty for his conduct.
But the episode led the National Institute of Health to require that proposals for government funding of scientific research should be approved by review boards that included laypeople from diverse races, classes and backgrounds as well as doctors and scientists. Out of this ferment, the modern concept of "informed consent" in medical research was born.
Scientists howled that progress would cease if there were such restraints on their work; but the curbs were enacted and research chugged along. Many people are at least somewhat willing to give consent, though questions always remain about how well most of us understand what we consent to.
However, as Skloot explains, even harder issues lurked in questions about individual privacy and commercial exploitation of bits of our bodies when they are handed over to the medical profession. Henrietta Lacks concludes with a careful afterward about the contemporary shape of these issues that should be required reading for scientists and concerned citizens. As research progresses deeper into unraveling the human genome, these questions will become ever more urgent.
Again, Skloot explicates the problem succinctly on her website:
My emphasis. That's the fulcrum of Henrietta Lacks' story. Rebecca Skloot has told it with balance and complexity.