Sara Reardon
nature.com
Originally posted 20 Aug 24
The image of a lone scientist standing up for integrity against a pharmaceutical giant seems romantic and compelling. But to haematologist Nancy Olivieri, who went public when the company sponsoring her drug trial for a genetic blood disorder tried to suppress data about harmful side effects, the experience was as unglamorous as it was damaging and isolating. “There’s a lot of people who fight for justice in research integrity and against the pharmaceutical industry, but very few people know what it’s like to take on the hospital administrators” too, she says.
Now, after more than 30 years of ostracization by colleagues, several job losses and more than 20 lawsuits — some of which are ongoing — Olivieri is still amazed that what she saw as efforts to protect her patients could have proved so controversial, and that so few people took her side. Last year, she won the John Maddox Prize, a partnership between the London-based charity Sense about Science and Nature, which recognizes “researchers who stand up and speak out for science” and who achieve changes amid hostility. “It’s absolutely astounding to me that you could become famous as a physician for saying, ‘I think there might be a complication here,’” she says. “There was a lot of really good work that we could have done that we wasted a lot of years not doing because of all this.”
Olivieri didn’t set out to be a troublemaker. As a young researcher at the University of Toronto (UT), Canada, in the 1980s, she worked with children with thalassaemia — a blood condition that prevents the body from making enough oxygen-carrying haemoglobin, and that causes a fatal build-up of iron in the organs if left untreated. She worked her way up to become head of the sickle-cell-disease programme at the city’s Hospital for Sick Children (SickKids). In 1989, she started a clinical trial at SickKids to test a drug called deferiprone that traps iron in the blood. The hospital eventually brought in a pharmaceutical company called Apotex, based in Toronto, Canada, to co-sponsor the study as part of regulatory requirements.
Here are some thoughts:
The case of Nancy Olivieri, a haematologist who blew the whistle on a pharmaceutical company's attempts to suppress data about harmful side effects of a drug, highlights the challenges and consequences faced by researchers who speak out against industry and institutional pressures. Olivieri's experience demonstrates how institutions can turn against researchers who challenge industry interests, leading to isolation, ostracization, and damage to their careers. Despite the risks, Olivieri's story emphasizes the crucial role of allies and support networks in helping whistle-blowers navigate the challenges they face.
The case also underscores the importance of maintaining research integrity and transparency, even in the face of industry pressure. Olivieri's experience shows that prioritizing patient safety and well-being over industry interests is critical, and institutions must be held accountable for their actions. Additionally, the significant emotional toll that whistle-blowing can take on individuals, including anxiety, isolation, and disillusionment, must be acknowledged.
To address these issues, policy reforms are necessary to protect researchers from retaliation and ensure that they can speak out without fear of retribution. Industry transparency is also essential to minimize conflicts of interest. Furthermore, institutions and professional organizations must establish support networks for researchers who speak out against wrongdoing.
