Sonia Anand of McMaster University, Gina Ogilvie from the University of British Columbia and Vanessa Watts, also of McMaster University explore the impact partial information can have on research in the health space.
Beyond its importance for scientific discovery, representation in health research directly influences health-care planning, policy development and resource allocation.
Without research that reflects the diversity of the populations served, important health needs may go unrecognised, contributing to inequities in prevention, diagnosis and treatment. Without research, major health issues faced by a given community cannot be known, nor can effective interventions be developed if the populations most affected are underrepresented in the evidence base.
Research ethics boards (REBs) exist to ensure that research is conducted ethically and to protect participants from privacy breaches, coercion and exploitation. But in striving to achieve these goals, ethical board policies can sometimes produce an unintended consequence: over-protection that restricts the participation of people and communities historically excluded from research, such as racialised communities, Indigenous people and recent immigrants.
