For Better Science: Misinformed and Damaged – victim of unethical trial hits back (2022)

A chilling account by Robert Cockburn, an Australian journalist, of how he was harmed by unapproved experimental devices in an asthma trial at Sydney University’s Woolcock Institute of Medical Research. He sustained long-term respiratory and neurological injuries from one of the devices.

When he tried to obtain more information about the trial, he was met with dismissal and silence, but he pushed on for 2 years, making multiple FOI requests:

- an investigation during the trial by the Sydney Local Health District that led to an update of the participant information & consent forms was covered up;

- the Therapeutic Goods Administration (the Australian medical regulator) withheld information on the lack of approval of the devices used in the trial;

- participant data was also being shared unknowingly to them with Politecnico di Milano’s spin-off company Resmed Respiratory Technology of Milan (manufacturer of one of the two experimental devices), which planned to sell them for financial gain.

This case is now being investigated by the Australian Research Integrity Committee.

https://forbetterscience.com/2022/07/06/misinformed-and-damaged-victim-of-unethical-trial-hits-back/

 

A particularly revealing excerpt, where Cockburn quotes the chair of the Human Ethical Rights Committee that approved the trial despite its incomplete participant information & consent forms, Prof McLachlan (bolding mine):

“It is not surprising how Sydney University fixed its unethical respiratory device trial. What is surprising is why such eminent people, some with international careers, ever took to rule-breaking when it was unnecessary. Perhaps, because they could and believed they were above the rules? I found one clue that Prof McLachlan felt he might have done something wrong. In a university interview on YouTube, a student asks him his greatest fear. Prof McLachlan says: ‘Being found out.’”

https://www.youtube.com/watch?v=sQ60ghHf0Jg