Living ethically in an unethical world

“The scholars who leave a lasting mark on their fields are often those who combine intellectual excellence with courage, imagination [and] persistence. It is this combination, alongside her scholarly excellence and leadership that has enabled Professor Jantina de Vries to not only contribute to the field of global health ethics, but to also shape its future.”

This was according to Professor Mashiko Setshedi, the chairperson and head of the University of Cape Town’s (UCT) Department of Medicine, as she introduced the audience to De Vries. De Vries is the founding director of UCT’s EthicsLab. Her work focuses on global health ethics, genomics and emerging technologies.

On Thursday, 25 June, she celebrated her ascent to full professor – a significant milestone in her career. Her family, friends and colleagues filled Groote Schuur Hospital's Lecture Theatre (others joining online) to mark the occasion. They listened attentively as she condensed years of work into an hour-long presentation. The lecture was titled “Bioethics – another world is necessary: Ethics as a tool of worldmaking”.

“Professor De Vries is a visionary leader, an accomplished institution builder and a scholar of extraordinary influence. Throughout her career, she has demonstrated that ethical scholarship is not merely about critique. It is about the courage to imagine and advocate for better alternatives,” Professor Setshedi said.

A field shaper

In her introduction, Setshedi highlighted several qualities that set De Vries apart from others in her field. To start, she said, De Vries is a field shaper. And while many scholars make important contributions to established areas of their field, she added, De Vries has done something more: she has helped to define and shape the field itself.

Her work has expanded global health ethics beyond traditional bioethical concerns to engage with questions of equity, power, governance, justice and representation in international research. Repeatedly, Setshedi said, De Vries has identified emerging ethical challenges and helped to create the conceptual frameworks through which these can be understood. Setshedi acknowledged De Vries’ intellectual courage. She said her scholarship addresses inequities embedded within global research systems and she has consistently engaged with some of the most difficult questions confronting contemporary science. She lauded her commitment to African intellectual leadership.

“Through her scholarship, her teaching and the leadership of major international initiatives, she has helped advance her vision of global ethics.”

“Professor De Vries’ work is grounded in the conviction that African experiences, intellectual traditions and ways of knowing should not simply be represented within global events. They should be helped, shaped and led by us on the African continent,” Setshedi said. “Through her scholarship, her teaching and the leadership of major international initiatives, she has helped advance her vision of global ethics in which Africa is not merely a setting of research, but a source of theory, insight and intellectual leadership.”

A lifelong dedication

When it was time to deliver her lecture, De Vries told her audience that she has dedicated her research to understanding how to live ethically in an unethical world, and how to engage with science and in science and technology in a way that promotes humans’ collective ability to live well together.

Over the years, she said, she has had the “incredible privilege” of working at the forefront of some of the most exciting developments in health science. As a young biology student, De Vries said she watched and debated the science fiction film Gattaca, which told a “somewhat far-fetched” story about a future in which only genome-edited humans could compete meaningfully in the labour market. Twenty years later, as a scholar, she was part of an advisory group that guided the World Health Organization’s director general at the time on the governance of heritable genome editing technologies.

“We live in a technological and scientific age, and the power of scientific innovations to drive change is astounding. Again and again, scientific and technological innovations are presented as transformative, capable of revolutionising medicine, eradicating cancer and improving human health,” De Vries said.

“Scientific and technological optimism is usually interspersed with [moral things], that through technology, we will build fairer, more just worlds where all humans can live lives of dignity. For much of my career I shared in that optimism and believed that ethics had an important role to play in helping science to realise that promise.”

The gaps

Yet, De Vries said, during her research she frequently encountered a gap between the ethical promise of science and what it seemed to be able to deliver in practice.

“Against the remarkable technological innovations of the past decades sits an uncomfortable reality that our world is far more fractured, far more unequal, more violent and more lonely than ever. That tension and the discomfort that it caused me became the starting point for the intellectual journey I want to reflect on this evening,” she said.

She touched on one of her first projects as an ethicist, a project called MalariaGEN – one of the first large-scale population genomic studies on malaria – a disease that primarily affects populations in the Global South. She said she was struck by how seriously the research team took the ethical work around seeking informed consent from participants and how well informed participants were about the details of the study. It was during this project and others thereafter where she witnessed how the procedural dimensions of ethics were taken seriously.

However, despite this, De Vries said she found herself feeling increasingly unsettled.

“Even where ethical procedures feel robust, deeper inequalities often seem to remain untouched”

“Even where ethical procedures feel robust, deeper inequalities often seem to remain untouched. I remember visiting collaborators in Cameroon where an entire postgraduate team shared a single laptop, which they operated through a working plug in a storeroom. Now this was in 2003. But still, it stood in sharp contrast with the incredible scientific infrastructure at Oxford [University] where the project was based,” she said. “I also remember particularly sexist encounters and these encounters were not recognised as ethically significant but as part of the course.”

Protecting communities

For a large part of her career, De Vries said she was actively involved with more traditional bioethics work, which focused on protecting research participants in communities and ensuring fairness in scientific research processes and data sharing. And while this was important and impactful work, she said, over time, she also started to see its limitations. Certain ethical questions were consistently treated as important, especially those related to informed consent, ethics review, community engagement and feedback findings.

“But broader questions about justice, power, labour, exploitation and structural inequalities were hardly paid attention to. I also came to realise that scientists’ ethical desires sometimes stood in sharp juxtaposition to their day-to-day practices, and that people could both be ethical and unethical at the same time,” she said.

“Robust compliance does not make science ethical, because compliance enacts its own world, one in which following of procedure stands for doing justice. You can be flawlessly compliant and still be acting unjustly.”

Unwillingness to think critically.

More than that, De Vries has also observed the unwillingness to think critically about the many ways in which bioethics scholarship perpetuates forms of harm and exclusion. Therefore, in her work over the years, she has interrogated how bioethics, despite its commitment to justice and inclusion, reproduces forms of epistemic injustice.

“Increasingly it seemed to me that bioethics was itself participating in shaping what kinds of ethical concerns become visible, whose voices carry authority, and what kind of futures could be imagined,” she said.

De Vries told the audience that her colleague and friend, Professor Francis Nyamnjoh from UCT’s Department of Anthropology, uses the idea of incompleteness to think about the world at large, about scholarship, knowledge and technology. And it’s through embracing the idea of incompleteness, she said, that other possibilities emerge.

“Incompleteness is a way of knowing; of recognising that all knowledge, scientific, ethical, political and otherwise is partial, situated and shaped by encounters and particular histories, assumptions and ways of seeing. And that the danger arises not from incompleteness, but from what might be called delusions of completeness,” she said.

“I have found in the language of completeness and incompleteness a way to frame my discomfort with the field of bioethics.”

For De Vries, science is a permanent work in progress.

“I have found in the language of completeness and incompleteness a way to frame my discomfort with the field of bioethics and to understand the process of science as a permanent work in progress, as work that will never quite end,” she said.