“We will no longer take it”: The need for transparency and informed consent in research

Amid Black History Month, experts in the medical field were invited to speak at a panel discussion at the Research Institute of the McGill University Health Centre (MUHC) in Montreal, in collaboration with the Office of Social Accountability and Community Engagement (SACE) of McGill University’s Faculty of Medicine and Health Sciences and the Black Community Resource Centre (BCRC) to discuss and address the concerns of Black patients and other racialized and underrepresented equity-seeking groups about transparency and informed consent in medical research.

“The black community has a long-standing relationship of mistrust with researchers because of the many black bodies that have been used for research against their knowledge,” said Audrey Sika Mvibudulu, a Master’s student in educational leadership at McGill University.

But the Research Institute at the MUHC say they are making an effort to change that and foster inclusion of Black communities in health research.

“At the Research Institute patients are not a number or a cell, patients are being recognized as humans, so our science needs to be more and more connected to people’s needs, more and more connected to the specificities of communities, so we are trying to do clinical trials that are more representative of Canadians diversity,” explained Diego Herrera, equity, diversity and inclusion specialist at the Research Institute of the MUHC.

“Normally, clinical trials only represent white or middle class people, now we are trying to expand that to include Black people, Indigenous people, pregnant people,” he added.

Although, clinical trials aren’t the only target that the RI-MUHC is trying to improve on.

According to data from McGill, Black Canadians make up a little more than 4 per cent of the country’s population and only make up nearly 2.5 per cent of practicing physicians.

“It’s been a known factor and that has proven, literally said that black patients respond better when they can see their own,” said Yvonne Sam, chair of rights and freedoms at the Black Community Resource Centre (BCRC), and self-described long standing community activist for the past 30 years who has been pushing for more Black Canadians in medical programs in universities.

Another main topic of discussion during the panel involved workplace racism and harassment, which data indicates is being reported by 80 per cent of Black Canadians.

“I know how it feels like to do research as a black person and to search for resources and there is a lack of resources. I know what it feels like to be a victim of microaggressions as well in the workplace, in academia and in school as well,” Mvibudulu.

According to a survey by Universities Canada, released in Oct. 2023, 83 per cent of institutions have an equity, diversity and inclusion (EDI) action plan in development or already implemented, representing at 13 per cent increase from the last survey conducted in 2019.

“We need to recognize that harassment, either in the workplace or in the relationship between patients and researchers is not a normal thing, that we need to create a horizontal relationship,” explained Herrera.

As part of their 2030 vision, Herrera says the Research Institute of MUHC also has EDI action plan that aims to bring researchers, patients and medical students to a place that is free from harassment, free from discriminations and with research that is better connected to a diversified population.