European grant to research colonial medical experiments: 'Should we keep using this data?'
When we think of unethical medical experiments, we tend to think first of Nazi Germany. What is less well known is that experiments were also carried out in colonised areas without the explicit consent of the test subject. University lecturer Fenneke Sysling has received a European grant to research this.
It was the corona pandemic that put Sysling back on the trail of medical experimentation in colonial society. 'I had already done a study on the racial and racist ideas of physical anthropologists in the Dutch East Indies,' she says. 'They were often doctors, and used people as research objects in all sorts of ways: ranging from making skull measurements to surreptitiously supplying corpses to museums. It’s something I’ve always been interested in.'
The pandemic and the resulting lockdowns fanned that dormant fire. 'Suddenly there was more talk about medical ethics again. I decided to look at the other colonies in Southeast Asia and the bigger story that might be told about them.'
Coercion, but also profit
Sysling was successful in securing a €1.5 million grant to research what medical ethics was like in colonial times. 'On the one hand, you have experiments like the one in a Philippine prison in 1906, where 13 prisoners died after being tested with a new cholera vaccine,' she explains. 'You might well ask why that was permitted and why the person responsible for it was just allowed to continue his career as if nothing had happened.' At the same time, however, she also sees that medical experiments had positive effects. 'It was quite common for people to demand new drugs, for example because they would rather take an experimental drug than continue to suffer the effects of syphilis.'
‘The government often emphasised that it brought medical progress. At the same time, this approach increased the coloniser's grip.'
That balance between compulsion and benefit interested Sysling. What room did patients have to demand or refuse treatment? What choices did doctors make? And how do you reconstruct that today? Many ethical norms were unwritten, and patients from the often poorer strata of the population did not keep documentation. So Sysling has to rely on official medical literature. 'Fortunately, the records from that period are much more explicit than the medical literature today. Patients' privacy was ignored, which for me means I can reconstruct a lot of what went on.'
For now, this leads to the picture of a complicated interplay between population and coloniser. 'We already know that the government often used medicine to justify its colonialism: it emphasised that it brought medical progress. At the same time, this approach increased the coloniser's grip.'
Contemporary dilemmas
An unequal balance of power, then, which still leads to dilemmas in the present day. 'Many medical photographs of patients have ended up in databases of museums or even the Leiden University Library,' Sysling explains. 'You might wonder whether you should want those images of naked or frightened people to be so readily available for viewing.'
And, an even more pressing question is whether you can still use the medical data from that time? Data collected back then is still being used today. 'So don't you have to take any account of the fact that no consent was ever given for that?' Sysling wonders aloud. 'I don't think you can say: you should never use the data, but you can discuss what rules should apply to it. Should you refer to the circumstances of the experiment in a footnote? Should large databases that record this data find out more about its origins? We also hope this research will help us get closer to answering these kinds of contemporary questions.'