The Ethics of Being Collected

When I was writing The Collectors of Lost Souls (2008), the picaresque yet tragic story of investigations of the lethal neurological disorder called kuru, the ethics of this scientific enterprise were much on my mind. As the narrative began to cohere and gather force, however, the dramatic elements and episodic intensity of the disease’s history and the Fore people’s responses to their mysterious affliction took over the book, subordinating any moral tale. The story was a remarkable one, a disturbing one, combining a brain disease previously unknown to medical science, first contact between whites and a remote tribe during the 1950s in the highlands of New Guinea, the threat of extinction of the Fore people, sorcery allegations, cannibalism, slow viruses, infectious proteins, mad cows, two Nobel Prizes in physiology or medicine, and the conviction of the lead scientist, American D. Carleton Gajdusek, for his sexual molestation of an adolescent boy. Altogether, it was a story one couldn’t make up – indeed, there were times when I wondered whether readers would ever believe it. So, while the emphasis on the ethics of research relationships continued to pervade the narrative, the sheer weirdness, even malignity, of the story seems to have dominated most readers’ first impressions. A reviewer called Lost Souls an academic page-turner, that rare genre, but I really wanted it to be also a reflection on research ethics. With the publication this year of the updated edition of the book, let me explain how it is both.

If pressed to identify an ethics theme in the book, most readers of Lost Souls, I expect, would observe the rapid shift from “anything goes” in medical investigations of Indigenous people in the 1950s to the more regulated and controlled research environment of the 1960s. When the rogue scientist Gajdusek ventured into the rugged Fore region in 1957, he recognized no formal ethics stipulations or protocols. Issues of informed consent and confidentiality meant nothing to him. Brains, blood, and other specimens might be extracted through what he called the “duress of personality.” Appalled by what they regarded as an American rampaging onto their territory, Australian colonial authorities in the 1960s began to exert some control over who could do what research on vulnerable subject populations. They established a research committee – which Gajdusek tried to circumvent or ignore – the antecedent of national gate-keeping institutions that still exist. They demanded to know what the scientist’s plans might be, and how he would engage with the locals, and help them. In an area recently pacified, the last thing colonial bureaucrats wanted was a renegade scientist, a medical descendent of Joseph Conrad’s Kurtz, causing trouble.

An admirer of Friedrich Nietzsche, Gajdusek always resisted these “shackles,” but later investigators of kuru, including Michael Alpers and John Mathews, were more likely to accept that research should be regulated. When Mathews was a medical officer stationed in the Fore region in the mid-1960s, he started to question how much pressure he should place on Fore families to permit autopsies of the kuru dead. He reflected on the feasibility of informed consent and the intelligibility of explanations of risks and rights in such circumstances, on the possible limitations of the ethics protocols that were becoming obligatory in human-subjects research in the United States and elsewhere. Later, as director of the Menzies School of Health Research, Darwin, and the Australian Centre for Disease Control, Canberra, Mathews drew on his colonial experience in New Guinea to stipulate ethics principles and codes for medical research on Aboriginal Australians.

By the time I visited the Fore in 2003, even a historian was expected to translate into Fore an extensive consent form in order to gain assent to an interview, and then offer to render the informant anonymous in the eventual publication – requirements that puzzled and irritated, even offended, the locals. Every time I tried to follow the rules, the people I hoped to talk to would tell me I clearly didn’t know how Fore went about things. The institutional review board’s insistence on Fore anonymity proved particularly vexing, so much so that I eventually discarded it. As an old Fore man, once an adolescent assistant to Gajdusek, put it in Pidgin: “I bet all the whitemen get to keep their names and get credit for their work – why not us too?’

Fore annoyance with, and alienation from, my efforts to conduct research “ethically” prompted me to rethink morality in the field. It made me realize that for all his flaws, Gajdusek, at the beginning anyhow, did seek to forge distinctly ethical relationships with Fore. As Kaoten – the name they gave him – he lived with them, learned their language, engaged in exchanges and transactions, in ceremony and ritual, participated in the local “moral economy.” He treated Fore with respect, and mostly they came to see him as a trustworthy person, at least for a while. Admittedly, he usually struggled to evaluate suitably the gifts he received and to reciprocate appropriately. Then in the 1960s, he just became greedy and exchange relations went terribly awry – he fell into moral peril. As many Fore observed metaphorically, Kaoten had arrived skinny, but over the years he became fat, very fat.

In other words, the story I tell in Lost Souls about the development of formal ethics protocols in out-of-the-way places is fundamentally an account of the breakdown of local moral economies. It describes how ethics became a separate domain of reason and codes, no longer embedded in social life, action, and character. Gajdusek’s later notoriety obscures his youthful intuition that behaving ethically was, as philosopher Immanuel Levinas would argue, an interpersonal enactment of responsibility, where virtue and duty derive from face-to-face encounters, not simply from following a set of rules. Ethics were just as “situated” as any scientific practices. Anthropologists such as Veena Das have called such ordinary ethics, “the cultivation of sensibilities within the everyday.” The ethical should be diffused through our lives and relationships, in our everyday evaluations and judgments, intrinsic to action. A formal “objective” code, the imposition of impersonal standards, is a poor substitute for an intersubjective moral economy, though perhaps now a necessary one. The Fore knew this – and Kaoten did too, till he forgot. This, then, is the ethics lesson I intended in writing The Collectors of Lost Souls.

Warwick Anderson, a medical doctor and historian of science, has been studying kuru, those who were affected by the disease, and the scientists who identified and investigated it for nearly thirty years. Based at the University of Sydney, he is the Janet Dora Hine Professor of Politics, Governance and Ethics in the Department of History. He is the author of The Collectors of Lost Souls: Turning Kuru Scientists into Whitemen, which is now available in paperback, Colonial Pathologies: American Tropical Medicine, Race, and Hygiene in the Philippines, and the coauthor of Intolerant Bodies: A Short History of Autoimmunity.