Indigenous health research: is it a “whole lot of noise”?

IN the 1920s and 1930s, teams of scientists from Adelaide made frequent excursions into central desert communities to conduct elaborate experiments on the physiology of Aboriginal people.

Doctor and medical historian Warwick Anderson wrote in his book, The cultivation of whiteness, of forced taking of physical measurements and blood samples, of experiments designed to assess Aboriginal people’s response to pain.

From the late 1920s, researchers including physiologist Cedric Stanton Hicks (later Sir Cedric) sought to study basal metabolism by requiring their experimental subjects to lie still for hours, noses clamped, breathing through a rubber tube attached to a large and complex apparatus.

The central desert people subjected to this procedure were understandably less than enthusiastic.

“It was no simple matter to get cooperation,” Hicks noted, stating an assistant was in some cases required to close a subject’s nostrils by hand.

Other unwilling participants he described as “very nervous”, “apprehensive” or “amiably stubborn”. A 9-year-old boy he said was “a troublesome subject … a peculiar ape-like type”.

A comment about the “many attempts made on [one] big powerful native” makes the degree of physical coercion involved in the experiments clear.

Anderson’s book prompted a 2002 apology from the University of Adelaide.

Some of the scientific experiments conducted on Aboriginal people by its researchers during the 1920s and 1930s were “degrading and, in some cases, barbarous”, the university’s vice-chancellor said.

The university did not name the researchers involved but it’s interesting to note its library, which holds Sir Cedric’s articles, still describes his research trips to central Australia with no comment about the ethics of the research.

Hicks, like many other non-Indigenous researchers of the time, brought to his endeavours preconceptions we would today see as unambiguously racist, variously describing the Aboriginal people he inflicted his experiments on as “venal and evasive” or “pathetic and unattractive imitations of Europeans”.

This was a time when eugenics was in high favour with researchers and policy makers alike, when poorly conducted research was used to bolster views that “dilution” of Indigenous blood would produce higher quality offspring, children more suitable for assimilation into white society often via forced removal from their families.

Research was conducted to satisfy the curiosity of the white men (mostly) who conducted it, with little regard for any benefits or harms it might bring to the subjects.

Efforts were often driven by a compulsion to collect data before it was “too late”, in other words before what was sometimes described as the inevitable disappearance of a doomed race.

Unsurprisingly, the experience of the past has led to some ongoing wariness among Indigenous people about the motives and practices of non-Indigenous researchers working in the field.

Since the 1990s, National Health and Medical Research Council guidelines have outlined ethical procedures to be followed in conducting research with Indigenous people.

The most recent version of the guidelines covers issues such as consent, communication, ensuring benefits of research are available to participants, and the need for equitable partnerships between researchers and Indigenous communities.

Guidelines alone cannot, of course, be expected to resolve the fraught history of medical research in this country.

Writing on the IndigenousX platform, three Indigenous scholars recently proposed a “Blackfulla Test”, listing 11 criteria they believe should lead to rejection of a grant application or research article related to Indigenous health.

Their proposed grounds for rejection include acknowledgment of Indigenous people as “advisors” rather than authors, omission of any references to publications with an Indigenous first author, and failure to address the context of poor health outcomes, including the history of colonisation and impact of ongoing racism.

Increased funding for research into Indigenous health in recent years has resulted in “a whole lot of noise … of which the benefit to Indigenous peoples and our health remains questionable”, write the three health researchers, Associate Professor Chelsea Bond, Dr Lisa Whop and Ali Drummond.

“This is most likely because so much of our intellectual and emotional labour is taken up reviewing and remedying highly problematic research grants and publications about us, that serve little purpose beyond the next academic promotion of the lead chief investigator (who typically isn’t Indigenous).”

What outcomes might we see if a greater proportion of health research was designed and led by Indigenous people? It’s surely worth finding out.

Jane McCredie is a Sydney-based health and science writer.

The statements or opinions expressed in this article reflect the views of the authors and do not represent the official policy of the AMA, the MJA or InSight+ unless so stated.