Fairness & Equity in Research Participation

Dr. Ashford Kerr introduces the case assessment exercise on the principles of inclusive participation in research guided by articles 4.1 and 4.4 of the ethical guidelines, focusing on promoting justice for all groups including children and those who may lack decision-making capacity.

Article 4.1 emphasizes that researchers are required to be inclusive in selecting participants and must not discriminate based on factors such as culture, language, race, disability, gender, or age unless there is a valid reason. The goal is to ensure fair representation and avoid unjust exclusion or over inclusion of certain groups.

The inclusion of children in research should not be based on age or developmental factors. Including children improves research quality, ensures that research addresses their needs, and requires evaluation of the child's developmental level and welfare, especially for those lacking decision-making capacity.

Articles 4.1 and 4.4 address the inclusion of individuals lacking decision-making capacity, particularly those with cognitive impairments. Historically, there have been issues of overinclusion due to convenience, but requirements dictate that participation should align with addressing the research question and considering the potential benefits to participants.

There is an ethical duty to disseminate all research findings, even if they do not support the initial hypothesis. Failure to disseminate can lead to wasted resources and erosion of trust. Researchers must make findings publicly available to ensure transparency and involvement of the communities.

Researchers are encouraged to share their data for research transparency and to safeguard participant privacy through best practices. Data availability and privacy measures are essential to facilitate ethical research practices.