Human Germline Genome Modification and the Right to Science: A Comparative Study of National Laws and Policies
Published by Cambridge University Press
ISBN-10: 1108499872, ISBN-13: 978-1108499873
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We have seen reports from bodies including the Nuffield Council on Bioethics, the US National Academies and the UK Royal Society, and most recently the World Health Organisation (WHO) giving recommendations on how regulation should be developed in this area (see BioNews 871, 1062 and 1103). However, in practice it can be difficult for laws and regulation to keep up with technology when something takes off in the way that genome editing has in recent years. The reality can be a lack of applicable law or existing laws may apply that did not anticipate developments of this kind. This volume attempts to give a comprehensive overview of the current regulatory situation across multiple jurisdictions, and – for the most part – succeeds.
The editors of Human Germline Genome Modification and the Right to Science are Professor Andrea Boggio, Professor Cesare PR Romano and Professor Jessica Almqvist, all legal academics who have worked and studied in both North American and continental European universities over their careers. They divide the book into three main sections: the first describes international legal standards regulating human germline genome editing, then the main part of the book is taken up with chapters outlining the applicable regulatory frameworks in 18 countries across North America, Europe, the Middle East, Asia and Australia. The final part offers a discussion of all these systems of regulation considered in the light of a human rights framework.
An introductory chapter 'The Science' gets the book off to a rather patchy start. I'm not sure what the authors were trying to achieve here – in part bombastic 'this scientific breakthrough has opened unprecedented and hitherto unthink-able research and therapeutic scenarios', part glossary (an attempt to explain the difference between germline and somatic cells) and part throwing in references to gene drives in the first paragraph.
An extensive description of the original function of CRISPR in the bacterial adaptive immune system and the steps in developing CRISPR-based genome editing seem irrelevant in a book about legal and regulatory perspectives, and a comparison of what germline genome editing could achieve in comparison with existing technologies such as preimplantation genetic testing might have been more helpful.
The section comes across as garbled, over-excited and under-edited. I understand why – genome editing is enormously exciting, but I would have preferred a comprehensive glossary of terms and signposting to other resources for readers wanting more background information.
The patchiness on the science continues throughout the book, with 'genome editing', 'gene editing' and 'genome modification' being used interchangeably.
After that, the book gets going with a section on international and transnational governance, and here the authors are in their element. The information is well-structured, organised and thorough. I will admit I've often found international regulation rather dry, but I genuinely enjoyed reading this section, especially the discussion of the 'right to science'. If you are going to read this text I suggest you skip the introduction and begin here, with chapter two.
The 19 chapters devoted to different national regulatory regimes are each written by a local author or authors, but they were asked to write to a template provided by the editors. The result is that each chapter has a slightly different style but is structured in a way that makes it easy to find and compare regulations in different jurisdictions.
One limitation to its usefulness is that regulation and guidance in this areas is likely to be reviewed in coming years and so the book will need updating and new editions published fairly frequently. For example, this volume predates the recent WHO reports, and although the formation of the committee that produced the reports was announced in 2018 and confirmed early in 2019 (see BioNews 987) the authors do not acknowledge this:
'The WHO's reluctance to engage in norm-setting and to make genetics and genomics a priority explains why there are no WHO standards applicable to genetic research, in general, and human genome modification, in particular.'
Science chapter aside, as a resource on law and regulation, the result is an extremely comprehensive, but easy-to-use volume that I would be very happy to have on my desk or in my (imaginary) reference library. If they get a science editor on the next edition it could be ten out of ten.
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