Núcleo Disca

Points of interest:

• This article analyzes the experiences of 18 researchers in Chile during the ethical evaluation of their projects on disability. Through interviews and a qualitative approach, four main issues were found:

1. 1. Ethics Committees often have an infantilizing view of disability and consider participants as “patients,” even when the study is not related to health.
   2. These views lead to a widespread belief about their (in)ability to give consent, which reduces their participation.
   3. Ethics Committees often ask for excessive demands, such as requiring a third party (usually a caregiver or family member) to validate the participation of people with disabilities.
   4. These practices have negative consequences: they exclude the voices of people with disabilities and replace them with caregivers; certain topics or populations are no longer studied; and researchers choose other topics out of fear of not being able to publish or losing their jobs.

Notes:

• The points of interest were written for dissemination purposes and were based on the publication. The points of interest cannot be cited as they are not part of the publication.
• This article was originally published in English.

Marshall P, Herrera F, Gallegos N, Ramos V, Ruíz B. Misunderstanding and Overprotection: The Impact of Research Ethics Committees on Social Disability Studies in Chile. Journal of Empirical Research on Human Research Ethics. 2026;0(0). doi:10.1177/15562646261476110