This year, the Council is starting a new project exploring ethical issues around genome editing. In this post, Dr Peter Mills sets out some of the issues and questions that might be considered and calls for contributions to the project. To register your interest in being involved or kept informed about this work, please email firstname.lastname@example.org.
edit (ʹed.ɪt) v.t. Prepare (written material) for publication by correcting, condensing, or otherwise modifying it.
I know a thing or two about editing. My first professional job was as an editor for a venerable London publishing house. Later, on different career tack, I saw how it could be both comforting and seductive to speak of the chemical bases adenine, cytosine, guanine and thymine as the letters of the ‘genetic alphabet’. I once visited an exhibition where the letters A, C, G and T were incomprehensibly recombined in minuscule type in 46 heavy, printed volumes that evoked the human genome for me like a bookcase in Borges' library of Babel. Genetics as the language of life, genes as its propositions, and the living organism itself as an argument mounted by nature against entropy and chaos. I have since learned to beware, even to disparage such metaphors; they are not bad metaphors but reasoning with metaphors is an errant and undisciplined pursuit.
The choice of the ‘genome editing’ rubric is perhaps a little coy. The reference to ‘editing’ irresistibly invites the comparison with authorship and suggests a more humble corrective. But when genome ‘editing’ is set not against divine ‘authorship’ but against aeons of evolutionary ‘trial and error’ it seems potentially far more influential, and influential far more rapidly, than random mutations and their lengthy embedding through ‘natural’ selection. That is, after all, its point. So, following the death of the author, we must take the rise of the editor more seriously.
Genome editing with engineered nucleases has progressed relatively rapidly from Nature Methods ‘method of the year 2011’ to this year’s preeminent, hypercathected technoscientific phenomenon. Cue calls for a voluntary moratorium on human germ-line-altering research (from researchers keen to keep their research interests away from the tarred brushes of public hostility) and on therapeutic applications (from the International Society for Stem Cell Research among others).
The escape of genome editing from the laboratory into the public sphere – especially following the development of the CRISPR-Cas9 system – suggests that contained use, at least in the sense of reserving questions about the use of genome editing for researchers qua researchers to address, is no longer possible. This is recognised in recommendations published in Science for “a globally representative group of developers and users of genome engineering technology and experts in genetics, law, and bioethics, as well as members of the scientific community, the public, and relevant government agencies and interest groups—to further consider these important issues”. But then, the image of the researcher qua researcher is itself a little artificial, a little denatured. The Science paper is the product of an Asilomar veterans’ club who are self-consciously participants in political and ethical debate as well as in scientific discourse, and they are variously citizens, parents, patients and consumers to boot.
In our 2012 report on mitochondrial DNA disorders we concluded that it was appropriate to describe cell reconstruction using the techniques we discussed as a ‘germline therapy’. (Policy makers subsequently tied themselves in knots to maintain that this germ line modification was not ‘genetic modification’.) We noted then that a “fuller discussion of the ethics of different kinds of prospective and theoretical germline therapies” (including those acting on the cell nucleus or involving nuclear transfer) would be advisable to underwrite robust policy decisions. The need for such a discussion is now pressing. The Nuffield Council on Bioethics will be taking forward this discussion in a project that will run throughout this year. However, the issues are clearly broader than those relating merely to human embryology.
So what are the ethical issues?
It is not clear whether the methods now in use, such as CRISPR-Cas9 system, themselves raise substantive moral issues of a kind that has not been contemplated previously. We have, after all, discussed genetic engineering, gene therapy, germline modification and disruptive innovation before (within crop science, animal breeding, biomedicine and embryology). But they certainly cast them in a stark new light. And the (apparently) relative ease, efficiency and economy of the new systems clearly have the potential to disrupt and reconfigure normative frameworks and practices in the biosciences and biotechnology, and challenge social, legal and regulatory norms.These raise questions that are not simply about balancing benefits and risks, or surmounting thresholds of safety and efficacy. They are questions about how different practices and outcomes are defined and valued, and how those values align or disturb others to which importance attaches.
Genome editing is significant, perhaps above all, because it connects the different registers of bioethics: the questions about justice, sustainability and public good confronted in relation to fields such as crop breeding, livestock engineering and pharmaceutical development, and those foregrounding individual liberty, autonomy and respect for persons confronted in fields such as human reproduction. The questions before us are: how do we want to use the technologies and what sort of future do we want to bring about with them?
On 22 April we will be holding a scoping workshop with invited participants from a range of backgrounds to flesh out the most important issues and identify the main questions we want to address with regard to genome editing.
We’ve invited participants each to submit up to 300 words in response to the question: What are the most important challenges raised by genome editing that the Nuffield Council on Bioethics should address? We will use the responses as the basis for our discussion at the workshop. We are keen to cast the net as wide as possible so, if you have up to 300 words in response to this question that you could send us, we would like to include those too – just use the comment box below.
Otherwise, if you would like to register your interest in the project, whether to be actively involved or simply kept informed, please email email@example.com.