When it comes to giving tzedakah, doing so anonymously is considered the most virtuous way to go. By the standards of the Rambam’s ladder of tzedakah, Henrietta Lacks would be one of the greatest tzaddikahs of all time. Lacks gave of herself by way of cells that have enabled scientists to conduct research to create the polio vaccine, uncover mechanisms of cancer, test the effects of the atom bomb, develop cloning and in vitro fertilization techniques and map genes.
She gave of herself so not only anonymously, but also unknowingly. And therein lies the crux of the ethical dilemmas relating to human tissue donation and use that underpin her story, as it is expertly and caringly told by Rebecca Skloot in her recent book, “The Immortal Life of Henrietta Lacks” (Crown Publishers, 2010).
Since my formal biology studies ended with “Biology for English Majors” — actually, I was an international relations major, but you get the point — I am not surprised that, until very recently, I had never heard of Henrietta Lacks. But then again, even if I had been a biology major, it’s not certain that I would have known about her by name before the publication this year of Skloot’s book.
For decades since her death from cervical cancer in 1951 at the age of 31, she was known only as HeLa, the code name given to the unusually strong and ultimately ubiquitous cell line grown from a biopsy of one of her tumors.
Skloot explores the issues surrounding race and socio-economics (Lacks was black, and from an desperately poor tobacco farming background) that play out in the HeLa narrative, but what caught my attention was a relatively short mention of another race-related piece of the story.
The advent of informed consent on the part of patients is more recent than many of us realize. Time was, doctors were performing treatments and procedures and scientists were conducting research on human tissue samples and medical experiments on living people without seeking written — or even informal — agreement from patients.
In 1963, when a famous doctor and medical researcher arranged for staff at the Jewish Chronic Disease Hospital in Brooklyn to inject patients with cancerous HeLa cells without telling them what was in the injections, three young Jewish doctors refused to participate in the study. They knew about the research racist Nazi doctors had done on Jewish concentration camp prisoners, and also about the Nuremberg Code, a post-Holocaust 10-point ethics code set out to govern human experimentation anywhere in the world — which was never enacted as law and which few doctors were aware of or followed.
When the three Jewish doctors refused to help with the study, the researcher had a resident give the injections instead, and the doctors resigned and moved their fight against experimentation without informed consent into the media and the courts. In response, they were ridiculed by many in the medical research establishment and accused of being overly sensitive on the issue because of their Jewish backgrounds.
I have no doubt that those three doctors did the right thing, and that if it were not for them and others who acted as they did decades ago, we would not have the laws we have today governing informed consent and patient privacy. But at the same time, had those laws been in effect when Henrietta Lacks was dying from cervical cancer in the “colored” ward of the Johns Hopkins hospital, we would likely be decades behind where we are now in terms of understanding human biology and genetics and fighting disease.
That is all the more reason why we are all indebted to this woman who gave at the highest level of giving — and then some.