Norm-setting & Nuremberg: Pivotal in bioethics story of Henrietta Lacks

lacksThe Nuremberg Code made them do it. Or not do it, to be precise.

“They” were “three young Jewish doctors” who refused a superior’s instructions that, in the name of medical research, they should inject unknowing patients with cancer cells. As stated in The Immortal Life of Henrietta Lacks, the 2010 bestseller by Rebecca Skloot:

‘All three knew about the research Nazis had done on Jewish prisoners. They also knew about the famous Nuremberg Trials.’

Skloot proceeds with a brief account of one of the 12 Nuremberg Military Tribunal trials that followed the Trial of the Major War Criminals. In the Doctors Trial,  23 physicians – among them 1 woman – were prosecuted for conducting medical experiments on camp inmates without their consent. The tribunal’s judgment set forth a list of 10 principles that became known as the Nuremberg Code. First and foremost:

‘1. The voluntary consent of the human subject is absolutely essential.’

Although it appeared in a judgment in 1947, issued by a panel of American judges sitting in Nuremberg, as late as 1951, that injunction had not penetrated the medical establishment Stateside. That is the year that physicians in Baltimore took cells from Lacks, a 31-year-old woman who soon would die from cervical cancer. Those tissues, and others taken in the course of her autopsy, gave birth to a cell line that lives to this day – cells numbering in the billions, used for decades, worldwide, to aid research on a host of diseases and genetic disorders. Lacks’ contribution to science is inestimable. But as Skloot relates in her book, which I’ve just finished reading, it took place without full and informed consent of Lacks or her family.

Indeed, it appears the informed consent norm articulated at Nuremberg was not firm even as late as 1963. That’s when those 3 doctors mentioned at top wouldn’t go forward with the ordered injections. Their refusal began a painful but necessary process of informing the family, by then impoverished in both material and emotional sense of the word. It is heartening to learn that the work of international criminal lawyers gave rise to a norm that led to this revelation of the truth – and, one hopes, to more patient-respectful procedures in our own time.

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