It is understood that the situations faced by bioethicists are difficult and often raises powerful emotions in those involved. In extreme cases, they can even involve challenging professional or institutional policies which are taken as all but gospel. Consequently, courage is a fundamental characteristic of many of the most significant bioethical decisions. Perhaps the best demonstration of this is the life stories of those who inspired me to begin my study of bioethics.
Arriving in the Deep South in 1914 Dr. Joseph Goldberger found himself facing not only with Pellagra, a formidable disease that in the early 20th century killed 40% of those it infected, but also a society and a medical establishment eager to see him fail. As a foreign-born, northern educated Jewish professional in the Jim Crowe South, Goldberger served as a walking reminder to the community of all they hated. Compounding his difficult situation was the fact that while the existence of a “pellagra germ” was held as unimpeachable by the majority of southern medical professionals, to Goldberger’s experienced eye, pellagra was undoubtedly a deficiency disease. This interpretation carried with it the implication that the poverty of Southern sharecroppers, tenant farmers, and mill workers were not only morally wrong but also had health consequences. In the face of entrenched antagonism, drastic measures were necessary if Goldberger was to demonstrate the validity of his theories. To sway the recalcitrant individuals, Goldberger put his own body on the line. In what came to be called “filth parties” Dr. Goldberger, his wife (at her own request), and his assistants injected themselves with the blood of pellagra sufferers, swallowed extracts from pellagra sores, and exposed themselves to various other bodily secretions from the afflicted. No one exposed in this manner developed pellagra, thus rendering the germ theory untenable. Having proved his point, Goldberger dedicated the rest of his life to determining “the preventative factor” that would allow him to deal the disease a final defeat.
This is obviously an extraordinary case and I am by no means implying we as bioethicists adopt measures this extreme, however, the story serves to reflect the struggle of weighing justice and improving patients’ lives against legitimately terrifying potential consequences, for example, advocating for patients when one’s job or reputation is on the line. The true lesson of the story is determining how far is too far regarding the risk and deciding based on our conviction how close to this line the boundary of courage and rashness lies.