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 unrecognized, 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 racialized communities, Indigenous people and recent immigrants.

An ethics process must not become so preoccupied with the potential harm of participation that it overlooks the certain harm of exclusion.

REBs often struggle to strike the right balance between protection and inclusion. When the pendulum swings too far towards protection, it can result in the very injustice it’s meant to prevent. The consequences can be profound: the people said to be protected are not heard, counted or represented in the evidence that shapes policy, care and resources.

The Canadian Tri-Council Policy Statement (TCPS-2) governing Canada’s three largest public research funders is clear on this point. The statement asserts that “over-protectionist attitudes or practices of researchers or REBs, whether intentional or inadvertent, can exclude some members of society from participating in research,” and that such exclusion “may constitute a failure to treat them justly.”

It also states that researchers, institutions and REBs “must navigate between the dangers of imposing unfair burdens on particular participants, groups and communities, and overprotecting them.”

It’s not protection at all costs, but protection balanced with justice. Ethics recognize exclusion as harm,........

© The Conversation