Leprosy Mailing List – November 15, 2019
Ref.: (LML) Is the use of an eponym for leprosy inappropriate?
From: Ruth Butlin, London, UK
Dear Pieter,
Apparently in his Memoirs in 1910, Armauer Hansen himself wrote "It was I who found leprosy's origins. In medical literature it is now partly referred to as Hansen's Disease". (quoted in Vogelsang 1978, ref 1).
In the past it was common practice to name a disease after the person who first described it, or occasionally after the patient in whom it was first described. Modern practice has moved away from this, towards use of descriptive terminology that indicates the nature or cause of the disease. Examples include Bright's disease, Still's disease and Charcot Marie Tooth Disease, now respectively known as glomerulonephritis, systemic juvenile idiopathic arthritis and inherited peripheral neuropathy. Use of a person's name is sometimes done to honour his contributions to medicine.
In recent times there has been a move to completely replace the term 'Leprosy' with the term 'Hansen's disease'. I contend that it would be more appropriate to use a term such as "mycobacterial neuro-dermatosis" if one wishes to avoid the undesirable social connotations of the word leprosy.
There might be no objection to incorporating the name Hansen into the name of the bacteria which cause leprosy, since Armauer Hansen was the discoverer of this bacterium (ref 2,3,4) (and we are grateful to him for that work). However, attaching his name to the disease - and by extension to people ("people affected by Hansen's Disease") who have had to live with the consequences of being infected by M leprae - brings undue honour to a man who was convicted of unethical experimentation on a human being. Surprisingly, this episode in his life is nowadays often overlooked: in some accounts of his life and work it is not even mentioned (refs 4, 5, 6).
Armauer Hansen made a series of excellent studies of the epidemiology of leprosy from which he showed that an infectious cause was more likely than inheritance, to explain the pattern of attack in populations both in Norway and in USA (ref 5). Carried away with his desire to demonstrate the transmissibility of leprosy, Armauer Hansen also conducted a number of human experiments (ref 1, 7).
In 1879, he decided to attempt to induce a "nodular" (i.e. lepromatous) form of leprosy in a woman who had been diagnosed with what he called the "anaesthetic" form of the disease (in modern parlance, roughly equivalent to paucibacillary leprosy) by inoculating her with material from a nodular leprosy case (refs 8,9,10). Using a contaminated sharp instrument, he deliberately pricked her conjunctiva, without her consent and despite the woman's protests (refs 1,10). This action was adjudged unethical even by the less stringent standards of the day. At the court case that ensued, it was found that "the accused…. has with clear intent taken advantage of his position in relation to the first witness so as to cause her bodily injury, …." (ref 10). He was stripped of his position as Physician at the Bergen Leprosy Hospital where the experiment had been carried out. He had to pay the court costs but was not jailed. He was allowed to continue in his other (non-clinical) appointment as Chief Medical Officer for Leprosy in Norway. Although at the time he seemed to show no remorse, defending his behaviour as justified in the cause of science (refs 1,10), it seems that later (being older and wiser) he understood his fault. His biographer (Vogelsang) says (refs 7,10) that, in an article written in 1885, he (Hansen) states almost as if it were a self-evident corollary "that we cannot experiment with human beings."
In other human experiments conducted by Armauer Hansen and Danielsson (ref 1), it is not known for certain whether some people were coerced into participating, as the victims may have been powerless to raise any official complaint (ref 10). The woman who was assaulted on 3.11.1879 was a 33- year- old who had been living since age 16 years in the institution at which Armauer Hansen was the senior doctor and responsible for her care. This fact might have made her more vulnerable to his abuse of medical authority. Without assistance from her pastor, she may have been unable to register a complaint against the doctor (ref 10).
The careful analysis of the case written by a Norwegian Justice of the Supreme Court, published some years ago (ref 10) deserves study, and more recently the case was highlighted by a Dutch neurologist (ref 11). I believe readers of the Leprosy Mailing List will concur with the view that "even a celebrated scientist is bound to obey the law of the land, and that it is the court's duty to protect every citizen also against encroachments from more influential persons" (ref 7).
References
1. Vogelsang TM. 1978 Gerhard Henrik Armauer Hansen 1841-1912, The discoverer of the leprosy bacillus. His life and his work. Int J Lep 46 (3-4), p257-332
2. Vogelsang 1957 Termination of leprosy in Norway Int J Lep, 25 (4) p 346-349
3. Vogelsang TM 1963 The Hansen Neisser controversy 1879-188. Int J Lep 31 (1), P 74-80
4. Schmidt, Matthias 2012. The Hundredth anniversary of Armauer Hansen's death 1841 -1912. Leprosy Review 83 (4) p 408
5. Harboe M. 1973. Armauer Hansen- the man and his work. Int J leprosy 41 (4). P417-424
6. Getz B 1958. leprosy research in Norway.1850-1900. Medical History,2 p 65-67
7. Vogelsang TM. 1968. Gerhard Armauer Hansen, 1814-1912. Oslo, pp 80-89.
8. Jay V. 2000. The Legacy of Armauer Hansen. Arch Pathol. Lab Med 124, p 496-497
9. Ghosh S, Chaudhuri S. 2015. Chronicles of Gerhard Henrik Armauer Hansen's Life and Work. Indian J of Dermatology, 60 (3), p219-221
10. Blom K. 1973. Armauer Hansen and human leprosy transmission- Medical ethics and human rights. Int J Lep 41 (2) p 199-207
11. Lanska D J. 2015. Armauer Hansen- the controversy. World Neurology Newsletter. Aug 2015, p 8.
LML - S Deepak, B Naafs, S Noto and P Schreuder
LML blog link: http://leprosymailinglist.blogspot.it/
Contact: Dr Pieter Schreuder << editorlml@gmail.com
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