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The ethics of research: how to end the exploitation of vulnerable communities

The Quiver Tree is also known as Kokerboom and Choje to the indigenous San people of southern Africa. Njambi Ndiba/Flickr, CC BY-SA

Vulnerable indigenous communities across the world have long fallen victim to plundering “bioprospectors” who have raided and commercialised their biological resources and given them little or nothing in return.

One such community is the San people of southern Africa. On March 2 2017, however, the San launched their own code of conduct to put an end to more than a century of invasive and exploitative research.

The San call themselves the “first people”. They have the oldest DNA of any humans on the earth and are therefore of great interest to researchers for their genes, their knowledge and their culture. The San have been one of the most commonly researched peoples in the world but many things that have happened in the past have left the San feeling abused by researchers. A lack of respect for local traditions and culture, a lack of care for local needs, a lack of any benefit to the San themselves and a lack of transparency in the researchers’ dealings have been commonplace.

In their new code, the San describe how genomics research has been undertaken without consultation or respect for the wishes of the San leaders. Researchers have taken photographs of individuals in their homes, of breastfeeding mothers and of children – all the while ignoring their social customs and norms. Bribes or other advantages have been offered. Furthermore, the code describes how many companies in South Africa and globally are benefiting from San traditional knowledge in the sale of indigenous plant varieties without any of the benefits being shared with the indigenous people.

As part of an EU-funded TRUST project, three South African San groups – the Khomani, the !Xun and the Khwe – have developed their Code of Research Ethics with the assistance of the South African San Institute. Importantly, this code has been written by the San and is closely aligned with their own values.

From now on, researchers who wish to undertake studies with the San will have to abide by the San values of respect, fairness, justice, honesty and care. No longer will researchers be able to rely solely upon ethical approval granted by an institution on the other side of the world which knows nothing of San traditions.

San code of conduct. Amy Dean.

It appears that the San Code of Research Ethics may be the first code of conduct for research to be developed by a vulnerable indigenous group in Africa. But the San hope that it will empower other groups and communities who are also at risk of exploitation.

Locally developed codes cannot replace the existing global codes for research ethics such as the Declaration of Helsinki, but they can help to ensure a more equitable relationship between researchers and participants at a local level.

Ethics dumping

This development is one part of the ambitious TRUST project. TRUST aims to put an end to the exploitation of people in low and middle income countries for research purposes. When researchers from countries where regulation is well developed (such as those in the EU) choose to conduct ethically dubious research in countries where regulation is not as strict, it is known as “ethics dumping”. The actions needed to prevent ethics dumping and put an end to exploitation in research are considerable. The San people have taken action to protect themselves but there are many other people and communities who are vulnerable to exploitation.

Through the TRUST project, partners from 13 institutions around the world are working together to help stop the practice of ethics dumping. By September 2018 these partners will have developed three new tools to achieve this goal.

1) A global code of conduct for collaborative research in low and middle income countries will be available for funders. Research that does not comply with this code should not be funded.

2) An online tool for fair research contracting will be available for vulnerable populations with no access to legal advice. This will help communities and groups to draw up contracts for their own protection in research.

3) A follow-up tool will be available to ensure that ethical standards are maintained during the research. This will help to make sure that agreements and approvals are honoured.

The groundwork for development of these tools has involved broad consultation. The next step will be the development of the tools themselves for testing.

San leaders and representatives from the South African San Institute and the San Council together with Dr Roger Chennells (legal adviser to the San and part of the TRUST project) at the launch of the San Code of Research Ethics in Cape Town March 2nd 2017. Amy Dean, Author provided

Together these actions will help to raise ethical standards in collaborative research. But researchers still need to be educated about local needs and values. The development of codes like the ones the San have produced can help to do this. And they can also empower local communities to take an active role in steering all of the research that they engage with.

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