Bioethics and witnessing

Abstract

Bioethics is about abstract reasoning and philosophical thinking.1 It is also about listening and telling stories; it is about ethical care and political imagination. In my way of doing bioethics, I need ethnography—the process of listening, feeling, and sharing lives—to understand how and why bioethical issues, such as life and death, care and abandonment, power and need, are lived concretely by people. It is a constant tension between the abstract concepts and the lived lives of people.

I know that it is not a shared definition, but doing bioethics means being an accompaniment-witness with the duty to speak the truth.2 It is not just the academic truth of methods and reasonable arguments; it is a truth that respects people's lives and actively seeking to challenge the oppressive powers. There is always a risk in doing bioethics as an accompaniment-witness—the risk of not properly listening to people and failing to fully respect their stories. I write academic papers, I make documentary films, I photograph fragments of survival and care, yet I struggle with not knowing how to best share my findings with people that matters the most: those at the center of the needs. To listen to them is to receive fragments of life and intimacy: my writings and images are formats for sharing back what they offer; and they are always precarious.

The ethical compromise to, first, share with them the academic work and to be challenged by them is one of the reasons that led me to make films and take pictures—as these are artistic ways of expressing my understandings in formats that are not just the jargon of academic papers; films and photos are languages that cross our multiple communities of expression. I always share my academic outcomes with women before moving from the role of listener to the public writer. Usually what happens is that they watch the film and recommend edits; they select the pictures they prefer. Not rarely, they ask me for new shots or new poses. They tell new fragments of life, and I am invited to be a listener again. We redo the work together.

I can imagine some readers arguing that this community engagement might contaminate my work or even introduce a pervasive bias into my writings. I have no counterarguments to this position, as I do not seek neutrality in my work, but rather I want to be reliable to the communities of practice in which I engage. And the academic community is just one of them. The gesture of sharing my writing or films with the communities is not the same as accepting their narratives or perspectives on the ethical issues: I am the author of my work, and the responsibility of how I frame their narratives is mine. It is more a movement of having them as my first interlocutors for whatever I want to say about their lives. As I do with my academic colleagues, I will open a conversation about my work, and in case of deep disagreements, we will find solutions to deal with them. As in academic dialogues, it is not all criticisms that we accept, but at least we offer time and space to be a listener.

The goal is to speak with and about them in spaces that they do not participate in, especially spaces with the power to protect their needs and change the conditions of precarity.3 The bioethicist is a witness that speaks the truth of people to the power. There is always a risk in speaking the truth to power—the systems of oppression, such as patriarchal and racist forces, want to keep the hegemony of the norms that circulate, they want to have the control of the laws and policies.

I might say that there is an additional risk in being such an active witness —we cannot be afraid of the political consequences of our academic work. I am a feminist doing bioethics, and someone can challenge my ethical and political positions about how to achieve gender justice; and after knowing each other's commitments to life, we can disagree about our principles. But, first, I need to know how the interlocutor learned about needs, care, abandonment, survival, or wellbeing, if they learned bioethics from books or also from people. I want to be challenged in my arguments and in my ethnography, in my academic rigor and my responsibility as an accompanied witness. I also see it as part of my responsibility to challenge those who do not agree that a more equitable world is a better space for all.

The bioethics I practice does not dissociate from imagination and emotions—as those are at the heart of listening to and understanding the people's stories. We need to be able to expand our imagination and learn how others feel about their life needs. Witnessing is not just about the other, it is also about us. It is a matter of taking responsibility for the privileges of being an academic writer and speaker. I am not sure if this is necessarily the “proper way” of doing bioethics. But it is one possible way: a combination of poetics and aesthetics; ethics and politics; of being there and here.

The author declares no conflict of interest.