Why Human Gene Editing Needs an Ethics of Scale

SdS: Your chapter is about genome editing technology; can you just tell us a bit about your choice of topic and the approach you have taken in the chapter?

MM: My background is in the field of Science and technology Studies or ‘STS’ and my personal area of interest is the social dynamics of biotechnologies, so genome editing was already something I was looking at. The new genome editing tools, such as CRISPR/Cas9 are pretty big news so it would be hard not to be aware of them.

SdS: Can you briefly explain what genome editing is?

MM: Sure. Genome editing refers to a set of tools and techniques in molecular biology that allow scientists to modify the DNA in pretty much any type of cell. Genetic modification has been around since the 1970s, but the new genome editing techniques that have come online in the last decade or so are generally considered much faster, easier to use and more accurate and more versatile than the older tools. So a lot of scientists- and companies- are very excited about their potential.

SdS: Great. So you were telling us about your approach in this chapter…

MM: Yes, so my main impetus for writing about genome editing, and specifically thinking about the broader social justice issues, really came out of my experiences of being involved in some of the debates about making inheritable or ‘germline’ genetic modifications in humans, which were going on before the pandemic came along. In a lot of that discussion, there's almost a desire to try and locate the ethical issues of genome editing in the molecular technique of genome editing itself, in what changes a tool like CRISPR/cas9 makes in a specific cell.  And I really feel that that is a misleading path. It's a problematic path because ultimately it always leads to the conclusion that if things are done technically correctly and appropriate consent is in place and it's in a safe medical environment, then there are no ethical issues. Whereas I do not think the important ethical and societal questions can be found at the level of one patient or one case or one clinic. For me, the important questions are at scale; it's what happens when the technology is scaled up at a global level.

SdS: Can you just say a little about how this relates to the book’s main theme of ‘being human during covid-19’?

MM: Well first of all, my chapter sits in the final section of the book which is entitled ‘Human Futures’ so it gave me a bit of licence to speculate about how genome editing might be used- or not- in the future rather than simply describe what is happening now. But also, I felt I that the pandemic really laid out, in a way that became obvious through the nightly news and daily headlines, some of these bigger issues. For example, the obvious one, it's not just about whether the vaccine works or not in one patient it's who has access to it,  who owns it, how you distribute it, how you make reliable information about vaccination accessible to different communities in ways that make sense to them… You really start to see some of those dynamics of fairness and access and equitability play out in real time in ways that are quite clear. A person would have to actively choose not to engage or be aware of them in Covid-19, whereas for genome editing people may be less familiar. It can be more work to raise the issues because it is not, yet, something that is ever present in everyday life. So covid was, I think, a useful lens to make the societal issues of genome editing more accessible.

MM: I should add the other seventeen or so chapters in the book have a wealth of more detailed accounts of the many different ways in which both coronavirus and the different technologies deployed to manage it, from vaccines to masks, impact different people, and different groups in society, differently. That really complements my argument. 

SdS: What would you see as your take-home message from the chapter?

MM: Technologies are not neutral. The balance of benefits and harms from innovation is unevenly distributed and tends to follow, and reinforce existing inequalities in society. How we design technologies- and who we design them for- matters. As well as how we make them available, maintain them, and so on. It is a familiar message from Science and Technology Studies but that doesn’t make it any less important, and it is worth repeating until we start to do better. Focusing on collective harms and societal level concerns is difficult because both Western law and ethics tend to prioritise individual choice and individual responsibility- but it’s a limited, and limiting, view and it ignores some of the really important issues. So, yeah if we can bring that a bit more into the conversation I will be pleased.

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The book is available from BUP - https://bristoluniversitypress.co.uk/being-human-during-covid-19.

Dr Stevienna de Saille is Lecturer in Sociology, Institute for the Study of the Human (iHuman) in the Department of Sociological Studies, University of Sheffield.

Dr Michael Morrison is Senior Researcher in Social Science with the Centre for Health, Law and Emerging Technologies (HeLEX) and Associate Fellow at the Institute for Science, Innovation and Society at the University of Oxford. His work deals with the dynamics of innovation in biological and medical technologies, where has worked on a range of topics including human enhancement, biobanking, and regenerative medicine. Michael’s work investigates how potential clinical applications of new technologies are shaped by scientific, regulatory, economic, and cultural factors using detailed empirical analysis and techniques of qualitative and interpretative social science.