For a bioethics of vulnerability

An ear, nose and throat specialist, Jean Lacau St Guily, Professor of Oncology at one of the Sorbonne's main teaching hospitals, argues that the current debates about bioethics in France tend to focus on expensive cutting-edge technology and thus exclude the realities of medicine for the underpriveleged and socially marginal patients who make up the majority of his practice.

Article source: Pour une bioéthique de la fragilité, Jean Lacau St Guily, La Croix, 12/03/2018

The meetings we hold every Monday for our department’s medico-social staff have become our weekly space for ethical reflection. We treat ear nose and throat cancer and it’s hard: many of our patients are poor and marginalised, social outcasts even. They drink and smoke despite their cancer, they have tracheostomies and gastrostomies. Most of them are lonely, unemployed, have no family and are not even going to recover…

But what we, as professionals working in French public hospitals, are observing is an obsession with cost-cutting. Regardless of what we do, we are told that we spend too much money, that we need to keep reducing costs, that there are too many nurses, whereas it is clear to all concerened that there are never enough.

All of our staff members have different professional roles, and different political and philosophical sensitivities. All of us are directly affected by the debates on bioethics since we actually experience them in our work and benefit from the scientific advances in our own professional lives.

But we all feel that financial implications will have a significant impact on the relationship between life and technology, i.e. bioethics. What we fear is that the survival of our impoverished and marginalised patients won’t carry much weight when we have to spend more and more money on it; we fear that nobody will care about them, and, when all is said and done, that a quick dignified death, involving as little pain as possible, might be seen as an elegant way of ethically dealing with the issue…

In the modern age of “GAFA” (Google, Amazon, Facebook, Apple, ed.), what we’ve all understood is that the biotechnologies that will take the world by storm because they are the most glamorous are those that are likely to appeal to the healthy citizens of the world, dreaming of an ever stronger and more perfect human being, who lives longer, free from disease and sheltered from death; constant innovation in biotechnologies of the possible, of limitless growth, technologies that can be distributed worldwide, and are increasingly expensive and profitable…

We can’t foresee everything that science and technology might make possible for humans since the ongoing progress is so dizzying. But when we look at our patients, they seem to be representative of the fragile, vulnerable aspect of humanity, which has failed to defend itself, and which very few are willing to defend because it is not seen as the world’s future.

Our assumption is that they will be kept out of the bioethics of progress, the bioethics of the possible, the constant striving for more. They will be left with paupers’ hospitals, the fate of the worse-off in society. Yet in France, we’ve always cared for the weakest members of the community.

It is our job to defend these people, our patients, as well as every disadvantaged person in our society, and the reflection on bioethics must not become completely dominated by the logic of what technology makes possible.

If life and death are two of the main subjects of bioethics, then it is indeed our responsibility to collectively develop bioethics of limits: of our own limits, of the limit between the human and the superhuman.

We should keep drawing inspiration from the weakest members of the human family in this reflection on what continues to make us a civilisation. And the development of an ethics of protection is an urgent and fundamental task in life sciences and technologies.

 

Translation by Sarah Dantreuille, Laura Chardar and Loïc Loembe.

Editing by Sam Trainor.

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