Tackling power imbalances in genomics research

Earlier in the year, Wellcome organised a workshop to delve into the ethical, legal and social implications of genomics in Cape Town, South Africa. It was the third in a series of workshops with the ambition to bring together perspectives beyond ethics, spanning the humanities, social sciences, policy and practice. The aim has been to explore the importance of collaboration between those disciplines, genomic scientists and social partners much earlier in the research process, both to enable more ethical and inclusive research and to open new kinds of research and research approaches. Attending were notable researchers with representation from countries in Africa, Asia, Latin America and Europe.

In this blog, we talk about some of the topics discussed with three attendees, Mercury Shitindo, the Chairperson and Executive Director of the Africa Bioethics Network and member of the eLife’s Global South Committee for Open Science, Dr Patience Chatukuta, Group Leader at the Max Planck Institute for Biology Tübingen and Dr Sarion Bowers, Head of Policy at the Wellcome Sanger Institute.

Patience: There are different levels of power imbalance. Economic capacity is the first level. Most of the genomics technologies, infrastructure and technical expertise are developed in high-income countries by making use of financial resources that low to medium income countries just cannot match. The reality is that low to medium income countries cannot afford these technologies, or cannot afford to use them to the same extent as high income countries do.

That feeds into the next level of power imbalance: agenda setting. Low to medium income countries are not quite able to drive their own agenda precisely because most funding for genomics research is coming from wealthier countries in Europe or North America and is attached to predetermined goals, goals that are often set without input from the LMIC partners.

If we then go one level lower, at my level, there are peer-to-peer disparities within scientific collaborations. Scientists with more funding are normally able to direct what scientists with lesser funding do - the scope of the research, the technical instruments used, the kind of data gathered, and how those data are going to be stored and utilised. The scientists with lesser funding tend not to have their agency in the research they're involved in.

Finally, there is the level of community impact. With respect to the communities that are impacted by genomics research, relevant stakeholders are still grappling with the question of “what should the benefits to the communities be?” In human genomics, for example, samples are taken from communities all over the world but how much agency do these communities have over benefit sharing and over how their data are being used?

Mercury: The way I look at it, we need a two-pronged approach. Resource allocation, from the outset, is imbalanced among partners from the global north and south. As Patience has pointed out, wealthier institutes have set out aims. By the time a partner from a middle or lower income country is included, they're responding to the partner’s need - not necessarily their need. Because they are not in a position to fund themselves, then they might not have a real voice. We need to find a way to empower our scientists, to give them the confidence to have assertive discussions with their collaborators and adequately represent their needs.

Sarion: We are thinking very carefully about how the Sanger Institute might position itself in the world. We might be one of the best resourced genomics institutes globally. How can we be an agent for societal benefit?

We need to have what may be challenging conversations and say, actually, we’re not going to do that specific research because it’s better done in a local setting and think about whether our resources would be better spent supporting others to do the work. Precisely to tackle the power imbalances that both Mercury and Patience have identified - this means recognising that while we could do the science, the science would be more ethical and have more societal benefit if others took this research forward.

Patience: The biggest change I'd like to see is the amplification of the voice of the partner who has lesser funding.

Mercury: I agree

Sarion: Absolutely!

Patience: I refer a lot to African insights. I am from Zimbabwe and I'm working with African plant genomics. African scientists already have their own research agendas, but because they do not have the infrastructural, human and technical capacity to pursue those agendas, they place them on the back bench.

What I would like to see - the agendas of lower and middle income scientists being at the forefront of international genomics collaborations and consortia. How to achieve this? I’d ask the funding organisations not to set objectives beforehand. Instead, get people together to talk about what they want to achieve and how they propose achieving it. Once there is a consensus, draft a research agenda based on that consensus.

Mercury: I couldn’t agree more with Patience. I’d also like to see equitable responsibility in projects, in terms of handling the funding, for example. African partners tend to feel like they’re being subcontracted and have no agency or freedom on what the money is spent on.

The funding schemes should not dictate how collaborations happen. We are in different settings and have different needs - I might have a lack of water access as a problem, which for a global north partner wouldn’t even be an issue. How are we going to be paired to do the same project if we have different needs and priorities? Independence and agency are key.

The way in which most models work, we have to force our priorities to align. This is why we keep having to fight the same health issues over and over again. The objectives from lower resourced countries are not met. I have to define my objectives to meet the objectives of the global North partner, and that partner will also need to meet the objectives of the funder. When you look at that cycle, I'm the one who's at the bottom, my needs will not align. The gain will be slim, perhaps recognition for the Principal Investigator who did the research, but we won’t be able to apply the outcomes to the local community, who we ultimately serve….meaning that ultimately there will be no real impact on the ground.

Sarion: Mercury and Patience have already covered it thoroughly. I’d only add - ensuring that local researchers in their own settings are able to make decisions so that they're not necessarily tied to having to work with researchers in the Global North. If we were being radical, we might even suggest Global North funders setting up regional funding pots that are led by regional leaders, rather than having it distributed from centres in the Global North.

I would also like to see better mechanisms for handling the transfer of money to those settings. We must comply with UK and local legislations around money transfers, but we don't necessarily support institutions to comply particularly well. This means we can be quite bureaucratic and unnecessarily repetitive in the process. There could be a more light touch approach -  having done financial checks once, if nothing has changed, there is no need to go through it again. It feels unnecessarily risk averse and at some level a sense that partners in under-resourced settings may not be able to handle their finances.

Mercury: New role models. Role models that are able to speak up, to show our early career researchers that they have a voice. Mentorship is brilliant, but it has to be mentorship that is aware of power imbalance and can train our future leaders in confidence, and empower them to find their agency. I would add that currently most of the mentorship received is from seniors who have been in the field for very long and have become accustomed to the status quo, and sadly pass on this perspective of a weak voice - a lesser voice. I guess mentorship should start from the top.

Sarion: Mentorship is a great tool. I’d include having regionalised funding pots, led by local, independent leaders. I’d also suggest revisiting the concept of international initiatives. We need to move away from projects that bill themselves as global but they very rarely are.

If there is a large international initiative, I think funders need to dictate who is at the lead - there has to be a certain percentage of people from under-resourced settings. If not, it is not truly a global initiative.

Patience: As Sarion has mentioned, dedicated funding works. For example, in the past year, the African Union has been driving the development of genome editing curricula for universities in select African countries. Interestingly, the countries that had been selected, apart from South Africa, were not doing genome editing research at the time of selection. So, how did this happen? Well, there was dedicated funding from the African Union to carry out this particular program, and as a result, these countries will have an empowered human resource base for genome editing research.

Further to this, I have been thinking a lot lately about the politics of knowledge. This touches on a different but related topic - how can we incorporate indigenous knowledge into our research projects? In my particular project in plant genomics, for example, we carry out surveys in the communities to find out how they use the plants we are sampling. We ask questions about how important the plants are in their diet, if the plants are good for building materials or if they are used in traditional rituals. The answers to these questions determine which traits we will focus on in our research. These answers also give us valuable information on the different “ways of knowing” about aspects of the plant that we may have initially missed. If the communities are empowered to contribute to the decision-making process, they will also feel empowered to conserve their genomics resources and cooperate with scientists in a mutually beneficial manner.

Mercury: I'm the chairperson for the Africa Bioethics Network. Within this role, I am very vocal about power imbalance in research. It all started during COVID-19 when I realised that many things were happening in Africa. Decisions were being made on our behalf with no real representation. We were not at the decision-making table, and if we were, we were not in touch with the realities on the ground and therefore not representative enough. We did not have a voice, local scientists were not being included evenly.

That got me thinking - the reason why we didn’t have representation was because we weren’t discussing these problems amongst ourselves. With this in mind, the network was formed with the vision of creating a platform where different experts representing different countries could come together and talk. To discuss ethical issues that affect us across disciplines, share knowledge, best practice and break down silos.

We now have representatives from 20 countries. Even though we don’t have funding, we have the right vision and the expertise to train others and become mentors to our younger researchers. At the moment, the training we’ve been focusing on is building capacity in ethics and ethical review committees.

Patience: Since I started my own research group, about half a year ago at the Max Planck Institute for Biology Tübingen, I’ve been thinking deeply about the ethics around the use of African plants, seeds, DNA and data. How does my work affect the communities that we are sourcing seeds from? How best can I communicate to them the importance of what I'm doing and how it benefits them?

While working in Europe, I’ve also been reflecting on my encounters with different attitudes towards ethics. In wealthier countries, ethics and regulatory issues are seen by scientists as a burden that takes time away from the science, instead of as a means to protect and ensure that the research is ethical and equitable. On the flip side, in less well-resourced countries, even though they may be signatories to the Nagoya Protocol, there doesn’t seem to be a genuine interest to monitor adherence to the protocol at a governmental level.

Therefore, in my personal capacity, I seize opportunities to talk about the ethical issues around genomics, to sensitise and create awareness of these issues in my sphere of influence and the networks that I am a part of.

In terms of ethics networks, the Africa BioGenome Project stands out for me. It is a Pan-African capacity building project whose aim is to build infrastructure, technical and human resources with a focus on non-human genomics. It is creating an agenda driven by regional scientists, all of it happening on the African continent and guided by project-specific strategies to deal with ethical, legal and social issues. The project has embedded ethical, Legal, and Social Issues (ELSI) into its regional workshops, thus benefiting African scientists who will conduct or are conducting genomics research.

To name another, there’s also the Human Heredity and Health (H3) Africa consortium. It focuses on developing human genomics research around health and disease on the African continent. It has a committee specifically focused on developing guidelines for ethics within this initiative and providing resources for different aspects of ELSI.

Photo group of the first workshop in London in March. Credit: Wellcome.

Sarion: At the Sanger Institute, we are involved in the Global Alliance for Genomics and Health (GA4GH). It has a regulatory and ethics work stream and I believe it’s an example of quite a powerful ethics network, however, I’d like to see more representation from under-resourced settings.

It’s in ethics in which the work of regional networks is most useful. In global initiatives, there is the danger of trying to harmonise across countries with very different research and ethical landscapes, which isn’t practical. By supporting more localised networks, we can build capacity within different regions bringing in local scientists.

The Human Cell Atlas (HCA) has quite a good track record on ethical practice as well. Its ethics network has produced documentation to support everyone within the projects to implement ethics within their country, with specific information on how to obtain consent, and due diligence before submitting data to repositories, for example. It also has an equity network, which sits alongside the ethics working group.

We're increasingly seeing big initiatives setting up ethics work packages, which is an important development. The next thing for me is how to properly embed ethics into science from the outset, rather than running ethics work as a side activity.

Sarion: I really hope that Sanger is going to play a fundamental part in trying out different ways that minimise power imbalances in genomics research. Whichever direction Wellcome wants to take these discussions forward, I’d love to propose Sanger as a sandbox to try out pilots and new initiatives. Roll it out to our community, build an evidence base and use case and then see how it can be scaled to future projects.