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Bioethics as a Profession: Expertise and Accountability for the Gene Editing Debate

With my students in the MA in Bioethics & Society at King's College London we spend one lecture at the beginning of the year discussing who and what the bioethicist is.
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With my students in the MA in Bioethics & Society at King's College London we spend one lecture at the beginning of the year discussing who and what the bioethicist is. This is not a matter that can be resolved in a short opinion piece and many contrasting ideas have been put forward, but of one thing I - and others - are pretty sure: bioethics is a profession, borrowing from Max Weber who first said it about science, and bioethicists are professionals.

I especially like to use an article by Professor of Philosophy at Wake Forest University Ana Iltis in which she says that the bioethicist is a person who is able to look at a complex problem raised by biomedicine and "read and understand contributions from these different disciplines [biology, philosophy, medicine, theology, social sciences, and economic] to synthesize and integrate those data, and then analyze bioethical issue and articulate one's assessment" (in this article). In addition, bioethicists are building on an extensive bioethical literature, so that they are not "reinventing the wheel" every time. In short:

Bioethics expertise cannot be improvised.

This last point is particularly poignant and has real consequences for how we govern science, as scientists have recently been calling for a moratorium on germ line gene editing technologies.

As I wrote on this blog before, it is, to say the least, a bit disheartening that we seem not to have made any progress in 40 years when it comes to governing science, and that we still refer to Asilomar as the exemplar of best practice for governing science.

Take, for example, the recent news that "US science leaders [are] to tackle the ethics of gene-editing technology." The National Academy of Science, in what has been explicitly called a "step reminiscent of one in 1975, when NAS convened the Asilomar Conference" is putting together an international summit on gene editing this fall. The intention is - or so it seems - to bring together scientists to set the ethical policies by which scientists work on and with gene editing technologies.

In another example, Francis Collins Director of the NIH has released a statement that NIH will not fund research using gene editing technologies in human embryos. This comes before any engagement with ethics, and as rightly pointed out by Pete Mills of the Nuffield Council on Bioethics, it is equivalent to "throwing out the bathwater, baby and all."

My concern is this: scientists who are experts in gene editing are experts in gene editing, and are not necessarily, or by default, experts in the related ethical issues therein. Scientists - unless they are also bioethics experts and professionals - are not to talk about the ethics of gene editing. Bioethicists need to do that, and should be held accountable for what they say. Which brings me to discuss the second "tenet" of the profession of Bioethics: Accountability.

In 2012, British bioethicist Malcolm Oswald put forward a distinction in White/Green papers in bioethics. According to this distinction, Green papers discuss philosophical arguments, and White papers engage public policy. While the former contribute something of relevance to academic debates, the latter's clear purpose is to contribute to public debates. The advantage, according to proponents of Green and White papers, is that from the outset, authors and editors would make clear their intention to other academics, to the public and to policymakers, who could then choose whether, and if so how, to read the paper.

I do not think the distinction holds water. Bioethicists cannot duck out of being held accountable for something they write on grounds of having written it in a Green paper only to advance some philosophical discussion. That, I think, is an oxymoron intrinsic to the profession of bioethics.

As put by American philosopher Eva Feder Kittay in her contribution to "Naturalized Bioethics, "those of us who engage in this work [Bioethics] must understand ourselves to be engaged in a practice that holds people accountable for the foreseeable consequences of their writings." That is, the words that we choose, and the arguments that we make as bioethicists, have an impact on the world. This is inherent to our profession. Writing only for academia is not a luxury that the bioethicist can afford.

Eva articulates four maxims as best practices of ethical thinking which are worth repeating here. The four maxims are:

1) Epistemic responsibility (know the subject that you are using to make a philosophical point)
2) Epistemic modesty (know what you don't know)
3) Humility (resist the arrogant imposition of your own values)

And the one that I think is the most important for the bioethicist,

4) "Accountability: attend to the consequences of your philosophizing".

Just as bioethicists should be held accountable as professionals, so to do they have expertise in Bioethics that cannot be improvised. Hence, returning to the ethics of gene editing, I believe that it needs to be the bioethics professionals who drive the debate. In the UK, some steps in the right direction have already been made. The Nuffield Council on Bioethics is engaging directly with the issue, for example.

What is the Presidential Commission on the Study of Bioethical Issues doing, in regards to gene editing? In the past, President Obama has commissioned work from the Commission which was deemed important, such as revising the guidelines for the protection of human subjects, or developing recommendations for synthetic biology. I hope that the governance of the science and technologies of gene editing is not going to be left to the NAS or the NIH.

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