Abstract
Human subject research in the United States has historically been governed by federal regulations attached to grant funding support. Through this regulatory reach, it has been possible to enforce standards of ethical treatment, built on the foundations of the Nuremberg Code, Declaration of Helsinki, and the Belmont Report, on the vast majority of research with human subjects in the United States. However, new research methods, such as citizen science, DIY biology, biohacking, and corporate research all pose challenges to the conventional approach, because they can be left ungoverned by these regulations. This requires us to think anew about how to ensure such research is conducted ethically. How can we think about ethical research in the absence of regulatorily required or universally shared norms?
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Notes
- 1.
For a history of how “guinea pigs” became the term used to describe human subjects of research, see Engber 2012).
- 2.
- 3.
“The Authorities, no doubt wisely, wished to avoid the mistakes of the last war, when so many men, whose professional or scientific qualifications would later have been valuable, joined the Army in 1914, so that the country was deprived of their special abilities. In order to make the best use of all technically-qualified men and women in any emergency, the ‘Central Register’ was set up some time before the outbreak of war” (Mellanby 1973, 20).
- 4.
“Preliminary discussions had suggested that there would be a good response to an appeal for volunteers to serve as subjects for medical research, provided that it could be shown that this would be likely to be of value in alleviating suffering, and…that it was not solely directed to improving military efficiency” (Mellanby 1973, 33).
- 5.
Mellanby’s attitude towards conscientious objectors can be gleaned from his comment that “[t]hey seemed to be more or less normal people” (48). One of the conscientious objectors, Allen Jackson, later became a “lifelong leading member of the Peace Pledge Union” (Melicharova 2006).
- 6.
- 7.
However, see Sarewitz (2016) for a pointed criticism of this approach.
- 8.
Some new approaches will incorporate oversight; for example, in collaborative research, the entire community might have input in and oversight of the project. But there is not currently any mandate for oversight in these new methods, so my interest is in establishing the kinds of ethical issues that are missed if researchers effectively work alone, so that they can be addressed in new research.
- 9.
His justification also has unfortunate resemblance to one justification for the Tuskegee study, to “rule out” the notion that syphilis affected whites and blacks differently. In both cases, the only justification for the hypothesis that something needs to be “ruled out” relies on unexamined stereotypes. As Mellanby points out subsequently, being less clean had no effect on scabies infestation, but did increase susceptibility to secondary infection after scratching dirty skin (which came from not allowing volunteer subjects to bathe, not from any inherent desire on their part not to bathe).
- 10.
Daniel Sarewitz explored this idea to great effect in “Saving Science,” concluding:
Advancing according to its own logic, much of science has lost sight of the better world it is supposed to help create. Shielded from accountability to anything outside of itself, the “free play of free intellects” begins to seem like little more than a cover for indifference and irresponsibility. The tragic irony here is that the stunted imagination of mainstream science is a consequence of the very autonomy that scientists insist is the key to their success. Only through direct engagement with the real world can science free itself to rediscover the path toward truth (2016).
Sarewitz’s concern is the frivolous questions that “untrammeled” researchers may sometimes ask, rather than potential harm to subjects, but both problems can stem from researchers untrammeled by external constraints.
- 11.
Obviously oversight is no guarantee that such biases may be caught, but it may make detecting them more likely.
- 12.
For an extended examination of volunteering for experimentation during WWII, see Newlands (2013).
- 13.
It is important to note, however, that many times, community members do have the requisite scientific expertise or can successfully learn it.
- 14.
For example, see Schneider (2015) for “Turkopticon,” a browser add-on that allows individuals doing work for Amazon’s Mechanical Turk site to review and exchange information about individuals requesting piecework on the platform. Also see Grayson et al. (2019) for an account of how Sage Bionetworks employs a “reverse panopticon” to monitor researchers’ use of data.
- 15.
Interestingly, however, in a paper published shortly after the second edition of Human Guinea Pigs appeared (based on a lecture given to the British Association for the Advancement of Science), Mellanby focused specifically on voluntariness in his scabies work: “From the outset I was adamant that I would only use genuine volunteers…. I was not prepared to accept ‘volunteers’ who were directed to work as guinea-pigs, but only individuals given unconditional exemption or a wide range of humanitarian choices. The proposed type of work was always full explained, and they were assured that they could withdraw at any time” (Mellanby 1975). This maps very clearly to the requirements of the Nuremberg Code regarding voluntariness, full information, and ability to withdraw. This description of his motives may well have been true, but it was not described this way in the first edition. The word “withdraw” does not appear at all in either edition, and where the word “information” appears, it is almost always about information gleaned, not information disclosed. One use of the word involves concealing information from participants. At the very least, this demonstrates that disclosing to readers of scientific work that participants were treated as autonomous agents was not important at the time of either edition. The timing of this article hints that perhaps Mellanby felt it necessary, after publication of the second edition, to elaborate on the voluntariness of the experiments.
References
Abadie, Roberto. 2010. The professional guinea pig: Big pharma and the risky world of human subjects. Durham: Duke University Press.
Beecher, Henry. 1966. Ethics and clinical research. New England Journal of Medicine 274 (24): 1354–1360.
Collins, Alice. 2006. Commentary: Guinea-pigs’ private war. International Journal of Epidemiology 35: 558–560. [Originally published in the Sheffield Telegraph, August 29, 2003, p. 12.] Available online: https://academic.oup.com/ije/article/35/3/558/735688.
Cooper, Melvin Wayne [Editor and translator]. 2019. Medical Jurisprudence and rules of the medical profession, by Rudolph Ramm. Translation with Introduction. Dordrecht: Springer.
Currier, R.W., Shelley F. Wlton, and Bart J. Currie. 2012. Scabies in animals and humans: History, evolutionary perspectives, and modern clinical management. Annals of the New York Academy of Sciences 1230: E50–E60.
Editor. 1947. “Dr. K. Mellanby, O.B.E.” Nature (May 24), 702.
Elliott, Carl. 2008. “Guinea-Pigging,” The New Yorker (December 30). Available online: https://www.newyorker.com/magazine/2008/01/07/guinea-pigging.
Engber, Daniel. 2012. “Test-tube piggies: How did the guinea pig become a symbol of science?” Slate (June 18). Available online: https://slate.com/technology/2012/06/human-guinea-pigs-and-the-history-of-the-iconic-labanimal.html.
Farmer, Ben. 2014. “British soldiers’ WW1 trench battles with STDs, rheumatism and wasp stings,” The Telegraph (October 8). Available online: https://www.telegraph.co.uk/history/world-war-one/11148580/British-soldiers-WW1-trench-battles-with-STDs-rheumatism-and-wasp-stings.html.
Grayson, Shira, Christine Suver, John Wilbanks, and Megan Doerr. 2019. Open data sharing in the 21st century: Sage Bionetworks’ qualified research program and its application in mHealth data release (December 11, 2019). Available at SSRN: https://ssrn.com/abstract=3502410 or http://dx.doi.org/10.2139/ssrn.3502410.
Jackson. 2004. Scabies by Kenneth Mellanby. Journal of Cutaneous Medicine and Surgery 8 (2): 73–76.
Maibach, Howard J. 1974. “Mellanby’s Scabies,” (Letter to the Editor). Archives of Dermatology 109 (3): 409. Available online: https://jamanetwork.com/journals/jamadermatology/article-abstract/533867.
McCullough, Laurence. 1998. John Gregory and the invention of professional medical ethics and the profession of medicine. Dordrecht: Springer.
Melicharova, Margaret. 2006. “The interest of science. Scabies and conscience,” Peace Matters 52(Autumn). Available online: http://archive.ppu.org.uk/peacematters/peacematters/2006/2006_autumn1.html.
Mellanby, Kenneth. 1973. Human guinea pigs. London: Merlin Press.
———. 1975. Experiments on human volunteers. Journal of Biological Sciences 7: 189–195.
———. 1988. “Itching to study lice and mites,” The Scientist (May 2). Available online: https://www.the-scientist.com/news/itching-to-study-lice-and-mites-63001.
Mellanby, John. n.d.. “Mellanby history.” Available online: https://sites.google.com/site/mellanbyhistory/mellanby-family/scientists
Newlands, Emma. 2013. ‘They even gave us oranges on one occasion’: Human experimentation in the British Army during the Second World War. War and Society 32 (1): 19–63.
Peace Pledge Union. n.d.. “Bernard Hicken’s story.” Available eonline: http://archive.ppu.org.uk/learn/infodocs/cos/st_co_wwtwo6.html.
Pemberton, John. 2006. Medical experiments carried out in Sheffield on conscientious objectors to military service during the 1939–1945 war. International Journal of Epidemiology 35: 556–558. Available online: https://academic.oup.com/ije/article/35/3/556/735661.
Perring, Franklyn. 1994. “Obituary: Kenneth Mellanby,” The Independent (January 11). Available online: https://www.independent.co.uk/news/people/obituary-kenneth-mellanby-1406138.html.
Romm, Cari. 2015. “The life of a professional guinea pig,” The Atlantic (September 23). Available online: https://www.theatlantic.com/science/archive/2015/09/life-of-a-professional-guinea-pig/406018/.
Sarewitz, Daniel. 2016. Saving science. The New Atlantis 49: 4–40. Available online: https://www.thenewatlantis.com/publications/saving-science.
Savin, J.A. 2002. Mellanby on scabies. Clinical and Experimental Dermatology 27: 86–87.
Schneider, Nathan. 2015. “Intellectual piecework,” Chronicle of Higher Education February 16.
Weindling, Paul. 1996. Human guinea pigs and the ethics of experimentation: The BMJ’s Correspondent at the Nuremberg Medical Trial. British Medical Journal 313 (December 7): 1467–1470.
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Rasmussen, L.M. (2020). Chapter 22 Of Mites and Men: What WWII Scabies Experiments Can Teach Us About New, Unregulated Human Subject Research. In: Rasmussen, L. (eds) Human Guinea Pigs, by Kenneth Mellanby: A Reprint with Commentaries. Philosophy and Medicine, vol 134. Springer, Cham. https://doi.org/10.1007/978-3-030-37697-0_24
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