Ethics Consultative Services for Marginalised Population (ECS-MP)
Background and Rationale
Marginalised populations in the Malaysian context include the indigenous, the homeless, children, migrants, refugees, people of low socioeconomic status, people with disabilities, survivors of gender based violence, survivors of trafficking and people deprived of liberty.
Research with marginalised populations is on the increase and is being conducted in a challenging and quick-changing environment. This presents exciting and important opportunities to learn more about marginalised populations, but caution must play a part to ensure that we are not violating any ethical code while doing so.
In Malaysia, research ethics infrastructure is present in the form of IRBs placed at Universities, the Ministry of Health and the major Hospitals. For research conducted in the community, in civil society organisations (CSOs), by international agencies, there is no avenue for ethical review. In addition, most existing IRBs have limited knowledge/capacity to address research on marginalised populations. Existing IRBs also have known political conflicts of interest that have been reported anecdotally as affecting the review of the project. All these factors result in researchers having to affiliate with a local university, not going through ethics review or simply not doing the research.
This service aims to fill this much-needed gap, providing independent ethical consultation for research conducted with marginalised populations in universities, civil society organisations, international organisations and independent researchers.
Frequently Asked Questions FAQs
1. What does the ECS-MP do?
The ECS-MP perfoms a specialised ethics consultation for research conducted with marginalised populations such as refugees, asylum seekers, people living with HIV and indigenous populations. It is encouraged that this consultation is conducted in addition to an academic ethics review.
2. Why does research with marginalised populations require specialised ethics review?
Marginalised populations have several features that accord them extra safeguards, particular in research projects. This ethics consultation provides an in-depth look at the context and population specific concerns, providing an extra layer of protection, using reviewers from the communities affected and researchers with experience on the ground.
3. How does the ECS-MP conduct ethics review?
Once the ECS-MP receives a complete application, the application will be reviewed by two trained reviewers with relevant experience in research and community engagement with the affected marginalised population. The expected turnaround time for review is two weeks.
4. What kind of studies should go through the ECS-MP?
Any studies that have indirect or direct contact with any marginalised populations would be encouraged to be sent for review with the ECS-MP.
5. Who is eligible to send their studies for review to the ECS-MP?
Any individual or organisation, based within or outside the University is eligible to send their studies for review.