Revision as of 13:02, 12 May 2025

Modules

Research Ethics in a Global Environment

Instructions for:TraineeTrainer

Goal

To encourage learners to consider the types of ethics issues that are associated with research in a global environment and how they might be addressed.

The learning outcomes

At the end of this module, learners will be able to:

Discuss the specific ethics challenges associated with international collaborative research.
Explain when benefit sharing is required and what constitutes fair benefit sharing.
Distinguish between different types of ethics dumping and identify the causes.
Explain the measures that can be taken to prevent ethics dumping.

Duration (hours)

2

For whom is this important?

All stakeholders in research

Part of

iRECS

Steps

1International Collaborative Research

2Preventing Ethics Dumping

3Preventing Ethics Dumping cont.

9Main Benefits of International Collaborative Research

10Francis Kombe - Collaborative research

11Research - Who Benefits?

12Jan Van Der Westhuizen

13What is Benefit Sharing?

14What Constitutes Appropriate Benefits?

15Appropriate Benefit Sharing

16Ethics Dumping

1

International Collaborative Research

One of the largest and best-known examples of international research collaborations is the Human Genome Project. This project, which ran from 1990 to 2003, involved a landmark global scientific effort to generate the first sequence of the human genome. Given the technical challenges and the enormity of the task, a large international consortium was established with partners from 20 different universities and research centres, from six different countries including the United States, the United Kingdom, China, Japan, Germany, and France.

The interdisciplinary groups included experts from a wide range of fields including biology, engineering, and computer science. Prior to the Human Genome Project, international research collaborations on this scale were virtually non-existent. Ultimately, the draft human genome had a significant impact upon advances in many different research fields including the biomedical sciences, forensic science, agriculture, and anthropology. But equally as important has been the project’s impact upon international agreements about open access to DNA sequences, and as a model for ambitious international research collaborations.

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Main Benefits of International Collaborative Research

What do you think are the main benefits of international collaborative research? List as many as you can and then click on the feedback tab to see some suggestions.

Some of the benefits of international collaborative research include that it:

Helps to ensure that the results of research are applicable across different environments.
Provides opportunities for partners who do not have the resources to undertake the research on their own.
Is more respectful of inclusivity and diversity.
Promotes efficiency, because each partner can bring different specialised skills or work on different aspects of the research.
Helps to generate new approaches to the study of complex issues.
Improves the funding opportunities for the partners.
Saves money because activities are shared.
Provides learning opportunities for partners with less experience.

Now, what do you think are the main challenges for international collaborative research? List as many as you can and then click on the feedback tab to see some suggestions.

Some of the challenges for international collaborative research include that it:

Involves different languages and different time zones that might lead to communication problems.
Exposes wide variations in locally available resources so that some partners can assume a more dominant role.
 Reveals different and potentially clashing expectations regarding the outcomes of the research.
Brings together people with differences in values, cultures, traditions, and social structures (for example, religious beliefs, animal welfare or gender roles).
Involves different legal requirements for the research (like the handling of data and/or materials).
Uncovers different and potentially clashing perspectives on research quality (how the research ‘should’ be conducted).
Involves different requirements and processes for research ethics approval.
Includes variations in skill levels so that tasks may not be distributed evenly (for example, some partners are only given menial tasks).

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Francis Kombe - Collaborative research

So, the space has changed over time. A while ago, collaborative research, especially where the original proposed study is from the Global North. Once you received approval from an ethics committee from the Global North, that was already enough to implement a study in any country in the Global South. But that has changed over time. Now, local approval is almost mandatory in almost all the countries.

What that means is, if you are proposing to partner with or to conduct research in any country in the Global South the first thing that you need to do is, even if you already have approval and clearance from all the regulators in the Global North, you're still required to submit that in a local accredited research ethics committee.

Now, depending on how that particular country operates, you may be required to submit that at the national level, or you may be required to submit that at an institutional level. Either way, depending on that, the ethics review committee then will look at that proposal based on all the elements that I already talked about, scientific validity, social value, risk and benefits and all the other things that I talked about.

But some of the critical elements when it comes to collaborative research for example, is the benefit

to the community. What are the benefits to the community that will be involved? You will remember the issues about parachute research where researchers from the Global North who are accused of coming to Africa to collect data and then they leave and sometimes their research is no value to the community at all. Now, these are things that have kind of raised red flags. So, these days when a

researcher is collaborating with another researcher in the Global South, there will be efforts, deliberate efforts to ask what is the value of this research to the community or to the subjects that will be involved in this particular research? That is one.

The second thing will be capacity building, because at the end of the day, if you are collaborating, you don't want to keep relying solely on partners from the Global North to conduct this kind of research. So, there will be questions around are there possibilities or opportunities to for example to co-share knowledge and skills, so that you know at the end of the day when this research comes to an end, the institution where this research was conducted is better off and more able to conduct this kind of research in future compared to when this kind of study was beginning. So, capacity building is really, really important and then community engagement where people are also made aware about this kind of research and there's more push now towards consenting and creating awareness about these kind of studies.

So, social value, capacity building and also co-creation and co-sharing is important where gone are those days where everything is conceptualized in the Global North and then directly implemented without consultation. So, people like to be brought on board during the conceptualization of these kind of studies where you come down, you sit down with your partners, you discuss these are the plans, and they have a voice in terms of proposing certain changes. So, for example, things that may not be that appropriate for the society or the community that will be involved, these are issues that can be thrashed out or cleared right at the planning stage before implementation.

So, that is what I call co-creation and yeah, so, co-creation and co-planning so that the partners in the Global South feel they're part and parcel of the projects and not just recipients where you come collect data then off you go and then they're like, okay so who was this?

In the rest of this module, we will be focusing specifically upon research collaborations that bring together parties from higher-income and lower-income settings. Often, these partnerships involve local groups or communities who are not researchers but nevertheless contribute to the research in a significant manner via participation or knowledge sharing etc. While these partnerships can be extremely fruitful for all concerned, they can also pose challenges for the equitable distribution of research benefits as described in the next section.

4

Research - Who Benefits?

The main purpose of research is to increase knowledge and understanding. Almost 2500 years ago Greek philosopher Aristotle said that all humans desire knowledge.

Knowledge creation can be driven by curiosity, as in the case of Charles Darwin who developed the theory of evolution.

Knowledge creation can also be driven by a desire to learn and to improve oneself.

When the learning is used to improve morally, Aristotle said that this would lead to happiness.

Ideas about knowledge creation today can be more ambitious.

One might think about knowledge with a view to solving global problems and improving the world.

So ideally, knowledge creation drives learning, solves problems and improves the world.

But there are several ways in which knowledge can be created. It can be created through thoughtfully reflection, which is one of the oldest knowledge creation methods known.

It can be created through the repeated observation of people, animals or the environment.

And knowledge can also be created through the analysis of data or resources, for instance, survey data or biological samples.

In fact, there are lots of resources that researchers can use for knowledge creation.

If researchers are solving problems and improving the world whilst using resources, that is fine, isn't it?

Of course. But until the findings from research are actually used to solve problems, the vast majority of benefits from research lie with the researchers.

5

Jan Van Der Westhuizen

Sometimes, the people who own or provide access to the resources are left with no benefits at all. For a long time, this was the case for the San Indigenous peoples of South Africa. You can hear from members of the San talk about protecting their Indigenous knowledge in this video. Listen to Jan Van Der Westhuizen talk about protecting San Indigenous knowledge.

The old people have allowed many of their deeply held traditional knowledge to be used in order to bring medicines to the table for the survival of humankind. Different plants have been used and we have applied our knowledge in order to conquer all those sicknesses. Meanwhile, my great forefathers died in poverty whilst they had provided such deep knowledge for those on earth. And so it goes on.

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What is Benefit Sharing?

Exploitation of one or more partners can be a problem in international collaborative research because the benefits of research are not always distributed evenly. Researchers must take care to ensure that everyone involved is treated fairly.

What is benefit sharing?

There are two meanings of benefit sharing. One is very obvious:

If different groups take part in an effort, they all ought to benefit from it. It is unfair if only one group does. For instance, if the traditional knowledge of indigenous peoples is used to create new products, they ought to benefit too.

The spirit of the Convention on Biodiversity captures benefit sharing based on contribution. It was opened for signatures in Rio de Janeiro in 1992.

The Convention’s third principle is the fair and equitable sharing of benefits from the use of genetic resources.

The Convention has 196 contracting parties, all countries worldwide, except for the United States and the Vatican.

It applies to plants, animals, microorganisms and related traditional knowledge.

Traditional knowledge could, for instance, be knowledge from an indigenous group about specific plan properties, but it only

The convention does not apply to human resources. And here is where the second meaning of benefit sharing becomes important.

The 2005 UNESCO Universal Declaration on Bioethics and Human Rights is a good example of a strong position on benefit sharing that goes beyond contribution.

It requires that benefits resulting from any scientific research should be shared with society as a whole and in particular with lower-income countries.

This means that everybody should enjoy the benefits from research, not just those who contributed.

As a researcher, you should do your very best to share benefits from your research equitably.

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What Constitutes Appropriate Benefits?

Benefit sharing is a legal requirement for all countries that have adopted the CBD. But what constitutes appropriate benefits for those who share their resources in research? Click on the hotspots to see some suggestions.

Nagoya Protocol on Access to Genetic Resources and the Fair and Equitable Sharing of Benefits Arising from their Utilization to the Convention on Biological Diversity

Appropriate benefit sharing arrangements may include a package of both monetary and non-monetary benefits. Most important is that fair benefits arrangements are discussed and agreed locally before the research begins.

8

Appropriate Benefit Sharing

The last word on benefit sharing goes to Reverend Mario Mahongo, who was Chair of the South African San Council, 2000 – 2018.

What I want to say is, I think there should be a benefit for the people who are being researched. I don’t want researchers to see us as museums that cannot speak for themselves and that don’t expect something in return. We are humans who deserve support. At the end of the day, the researcher is happy because he received what he wanted from us, but we also need to be happy in what we receive from him because we also want to benefit from the research. So, we will allow them to do the research, but it must be based on equality, not one-sided.

9

Ethics Dumping

Humanities’ challenges require global research, yet global research can have a dark side. Ethics dumping.

When researchers from privileged settings offshore unethical research to lower income settings, that's ethics dumping. It can happen on purpose, but also due to lack of awareness and cultural misunderstandings.

Research from the Trust Group identified six types of ethics dumping, even though others might still emerge.

Probably the best known type of ethics dumping is the application of double standards, where exploitative practises that are not accepted in a high income setting are used in a lower income setting. For instance, 3 clinical trials on cervical cancer screening methods were conducted in India from 1998 to 2015.

254 women in the North screening arm died due to cervical cancer. A no screening control arm would not have been allowed in the USA but was accepted by the US funders for these clinical trials in India.

Another commonly known type of ethics dumping is also called helicopter research. This occurs when researchers from a higher income setting fly into a lower income setting to conduct a study and make use of resources without fair benefit sharing. For example, in 1995, a research team from the US university obtained blood samples from 10s of thousands of impoverished Chinese villages. A US based company linked to the university received multimillion dollar investments on the basis of the collected genetic information.

One type of ethics dumping, which is often not done on purpose, involves culturally inappropriate conduct. This is a particular challenge in global research. For instance, in many regions of the world, community assent or approval will be necessary before research can be conducted ethically. It is the responsibility of the researchers to find out what is culturally appropriate conduct in any new setting.

A related issue that is also linked to insufficient local knowledge involves a lack of due diligence. This can put local research participants at risk. For instance, in Kenya, where sex work is illegal, collecting personal data about sex workers can put them at high risk of incrimination.

Dishonesty in global research is another form of ethics dumping which occurs regularly. For instance, where funding proposals require participation from lower income countries, researchers are recruited with promises of equal rights and equal budgets, which are not honoured. Later, research participants are promised feedback on the study they are recruited to, but the researchers do not return and the promises are not kept.

Finally, patronising conduct is also a form of ethics dumping. If research teams from a higher income country assume an air of knowing best, even in a foreign setting, the collaboration is disrespectful and can lead to inappropriate or insensitive results.

Ethics dumping damages trust and adds unfair burdens onto those who are already burdened.

It is therefore essential that researchers work as closely as possible with local collaborators and reflect together on ways to prevent ethics dumping.

As you learned from this video, ethics dumping can take many different forms. The group who developed the TRUST Code explored different cases and types of ethics dumping prior to the development of the code. You can read about 14 of the cases that they explored in this open access book: Ethics Dumping Case Studies from North-South Research Collaborations

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Preventing Ethics Dumping

The TRUST Code, a global code of conduct for equitable research partnerships, was designed to address ethics dumping. You can watch two videos here about the code: one gives an overview of the code, and one introduces its 23 articles.

The TRUST Code, a global code of conduct for equitable research partnerships, was developed from 2016-2018 by 13 partner teams and 12 advisors from all continents. The majority of team leaders were women and the majority of partner teams were from middle or lower-middle income countries. Invaluable input was provided by two communities that are vulnerable to exploitation in research: sex workers from Kenya and Indigenous peoples from South Africa. The code is based on a risk analysis of the potential for exploitation in international research. 88 risks were identified and dealt with in the code. After its launch in the European Parliament, the code was adopted by the European Commission and since then, by other high-profile adopters. The code is short, precise and clear so that it can be used by all stakeholders, including those who are at risk of exploitation.

You can read more about the TRUST Code here:

https://www.globalcodeofconduct.org/You can read more about the TRUST Code here: https://www.globalcodeofconduct.org/

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Preventing Ethics Dumping cont.

In the next video you will hear from some of the people who were involved in developing the TRUST Code, summarizing the 23 articles that promote equitable research partnerships in international collaborative research.

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The !Khwas ttu Kids

The final video in this module is the winning video from the FGVA sponsored rap, dance and music competition held for the TRUST project. "We are the San", from !Khwa ttu Kids is a representation of the values of fairness, respect, care and honesty through song, film and dance. Congratulations to the team at !Khwa ttu.

If you want to learn more, please visit the bibliography and further reading page for some relevant resources.

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End of Module Quiz

You can try these questions to see whether your learning from this module addresses the intended learning outcomes. No one else will see your answers. No personal data is collected.

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Glossary of Terms

Equality

Equality implies that people are treated equally in terms of rights, or access to services etc. without discrimination or unfair advantage. In the context of social justice and human rights, equality involves equal access to resources and opportunities, as well as ensuring that individuals are not disadvantaged or marginalised. This can include efforts to address systemic inequalities, discrimination, and barriers to full participation in society.

Equity

Equity refers to fairness in the distribution of resources, opportunities, and rights. It involves ensuring that everyone has access to what they need to thrive and reach their full potential, regardless of their background, identity, or circumstances. Unlike equality, which aims to treat everyone the same, equity recognises that different individuals or groups may require different levels of support or resources to achieve equal outcomes.

Intellectual property rights

Intellectual property rights (IPR) refer to the legal rights granted to individuals or entities to protect their creations or inventions, which can include inventions, literary and artistic works, designs, symbols, names, and images used in commerce. These rights typically include patents, copyrights, trademarks, and trade secrets, granting creators or owners exclusive rights to use and control their intellectual property for a specified period. These rights enable individuals and organizations to benefit financially from their innovations and creativity while fostering innovation and creativity by providing incentives for research, development, and investment.

Traditional knowledge

Traditional knowledge encompasses the accumulated wisdom, practices, and innovations passed down through generations within a specific culture or community. It includes knowledge about the natural environment, biodiversity, agricultural practices, healing methods, cultural expressions, and other aspects of traditional lifestyles. Traditional knowledge is often orally transmitted and deeply rooted in local customs, beliefs, and experiences. It plays a vital role in sustainable development, biodiversity conservation, and the preservation of cultural heritage.

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Bibliography

Articles and books

Chatfield, K., Schroeder, D., Guantai, A., Bhatt, K., Bukusi, E., Adhiambo Odhiambo, J., ... & Kimani, J. (2021). Preventing ethics dumping: the challenges for Kenyan research ethics committees. Research Ethics, 17(1), 23-44. Available at: https://journals.sagepub.com/doi/full/10.1177/1747016120925064 (Free to download)

Schroeder, D. (2007). Benefit sharing: it’s time for a definition. Journal of medical ethics, 33(4), 205-209.

Schroeder, D., & Pisupati, B. (2010). Ethics, justice and the convention on biological diversity. Available at: https://clok.uclan.ac.uk/9695/1/Ethics,%20Justice%20and%20the%20convention.pdf (Free to download)

Schroeder, D., Cook, J., Hirsch, F., Fenet, S., & Muthuswamy, V. (2018). Ethics dumping: case studies from north-south research collaborations. Springer Nature. Available at: https://link.springer.com/book/10.1007/978-3-319-64731-9 (Free to download)

Schroeder, D., Chatfield, K., Singh, M., Chennells, R., & Herissone-Kelly, P. (2019). Equitable research partnerships: a global code of conduct to counter ethics dumping (p. 122). Springer Nature. Available at: https://link.springer.com/book/10.1007/978-3-030-15745-6 (Free to download)

Schroeder, D., Chatfield, K., Muthuswamy, V., & Kumar, N. K. (2021). Ethics Dumping–How not to do research in resource-poor settings. Journal of Academics Stand Against Poverty, 1(1), 32-55. Available at: https://journalasap.org/index.php/asap/article/view/4 (Free to download)

Wynberg, R., Schroeder, D., & Chennells, R. (2009). Indigenous peoples, consent and benefit sharing: lessons from the San-Hoodia case (Vol. 15). Berlin: Springer.

Research ethics codes

The San Code of Research Ethics, available from: https://www.globalcodeofconduct.org/affiliated-codes/

The TRUST Global Code of Conduct for Equitable Research Partnerships, available from: https://www.globalcodeofconduct.org/

Videos

More videos can be found here: https://www.youtube.com/@trustandprepared1000