When science trusted in its own virtue ... and subjects could not

Writer Rebecca Skloot describes her narrative, The Immortal Life of Henrietta Lacks, as "a logistical and organizational nightmare." It certainly is expansive, episodic, complicated, nuanced, informative, intelligent, easy to read, and morally sensitive. I'm not going to pretend to summarize beyond passing on this description, from Skloot's website:

Henrietta was a poor black tobacco farmer whose cancer cells [labeled as HeLa], taken without her knowledge, became one of the most important tools in medicine, with disastrous consequences for her family. Today, her family can’t afford the health care advances their mother’s cells helped make possible.

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:

In February 1954, [Dr. Chester] Southam loaded a syringe with saline solution mixed with HeLa. He slid the needle into the forearm of a woman who'd recently been hospitalized for leukemia, then pushed the plunger, injecting about five million of Henrietta's cells into her arm. Using a second needle, Southam tattooed a tiny speck of India ink next to the small bump that formed at the HeLa injection site. That way, he'd know where to look when he reexamined the woman days, weeks, and months later, to see if Henrietta's cancer was growing on her arm. He repeated this process with about a dozen other cancer atients. He told them he was testing their immune systems; he said nothing about injecting them with someone else's malignant cells. ...

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.

So, in May 1956, he placed an ad in the Ohio State Penitentiary newsletter: Physician seeks 25 volunteers for cancer research. A few days later he had ninety-six volunteers, which quickly increased to 150. ... Research on inmates would come under scrutiny and start being heavily regulated about fifteen years later, because they'd be considered a vulnerable population unable to give informed consent. But at the time, prisoners nationwide were being used for research of all kinds-from testing chemical warfare agents to determining how X-raying testicles affected sperm count. ... Southam gave multiple cancer cell injections to each prisoner, and unlike the terminally ill patients, those men fought off the cancer completely....

In the coming years, Southam injected HeLa and other living cancer cells into more than six hundred people for his research, about half of them cancer patients. He also began injecting them into every gynecologic surgery patient who came to Sloan- Kettering's Memorial Hospital or its James Ewing Hospital. If he explained anything, he simply said he was testing them for cancer. ...

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:

The thinking in science has always been that everyone should participate freely in tissue research -- giving freely of their cells and tissues -- because it helps medical progress. When you go and have a biopsy taken at a hospital, you sign a form that says my doctor can dispose of my tissues any way he sees fit or use them in research, those tissues are stripped of your identity and used in research.

The attitude has long been that everyone should allow their tissues to be used for the good of science because everyone benefits, since the research leads to important drugs, vaccines, etc.

But the thing is, not everyone does benefit in the United States, because we don’t have universal access to health care. There is an imbalance in this country, which means many of the medical advances coming from tissue research aren’t available to everyone, sometimes including those who provided raw materials for the research.

My emphasis. That's the fulcrum of Henrietta Lacks' story. Rebecca Skloot has told it with balance and complexity.