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SCME Report Summary

Project ID: 659700
Funded under: H2020-EU.1.3.2.

Periodic Reporting for period 1 - SCME (Selecting, Creating and Modifying Embryos: the ethics of new reproductive genetic technologies)

Reporting period: 2015-09-01 to 2017-08-31

Summary of the context and overall objectives of the project

As a result of the rapid development of genome editing technologies, governments around the world need to examine their regulatory approaches to reproductive technologies. The ethical implications of these technologies is a key input into these considerations. The driving goal of my project was to deeply analyse the ethical, philosophical and policy issues surrounding germline genome editing and other advanced biotechnologies.

Such a project is important for society because so much is at stake in regulating these technologies. Genome editing technologies are seen by some as raising very serious ethical worries (such as leading to a world of designer babies and eugenics), and by others as promising to promote human flourishing. Therefore, there is an urgent need to give them systematic ethical scrutiny.

The overall objectives of my project were:
1- Systematically analyse arguments about the ethical implications of embryo selection, creation and modification technologies
2- Analyse concepts related to genome editing, such as ‘enhancement’ and ‘eugenics’
3- Construct an ethically permissible model of the development and implementation of germline genome editing
4- Provide input into public policy debates

Work performed from the beginning of the project to the end of the period covered by the report and main results achieved so far

Before analysing the ethical and philosophical aspects of selection, creation and modification technologies , I made sure to get a clear grounding in the scientific facts regarding the technology. I conducted in-depth interviews with three leading scientists: Robin-Lovell Badge at the Francis Crick Institute, Malte Spielmann at the Max Planc Institute for Molecular Genetics, and Tony Perry from the University of Bath. These interviews helped clarify what is possible to achieve with genome editing technologies; and which methods of genome editing would be technically plausible in the short and medium term.

Next I analysed two philosophical concepts of relevance to genome editing ‘enhancement’ and ‘eugenics’. This resulted in two publications. One chapter titled ‘Human Enhancement: Conceptual Clarity and Moral Significance’ was accepted for publication in the edited collection “The Ethics of Human Enhancement: Understanding the Debate” published by Oxford University Press. My paper on Eugenics titled ‘21st Century Eugenics’ was accepted for publication in the edited collection “The Oxford Handbook of Reproductive Ethics” also published by Oxford University Press.

The next stage of my project involved reviewing the ethical arguments in favour and against germline gene editing. The resulted in the publication of an article titled ‘The Ethics of Germline Gene Editing’, in the Journal of Applied Philosophy. This was the first article to provide an overarching look at the ethics of using genome editing technologies to alter the human germline.

Next I looked at the obligations of parents with respect to selection, creation and modification technologies . I argued that just as it is morally permissible for parents to use PGD to avoid disease in their children, it is morally permissible for them to use genome editing in the same way. This resulted in a chapter that is forthcoming in an edited collected titled “Autonomy and Wellbeing in Bioethics: European Perspectives”.

Next I looked at the regulation of selection, creation and modification technologies. After a careful review of the legislation around the world, I noted the vast discrepancies between the regulation of genome editing, and other reproductive technologies like gamete screening and PGD. I argued that there was no moral justification for these discrepancies. This work resulted in an article titled “If you can screen for brown eyes, you should be able to edit out genetic disease”, published in The Conversation.

Finally, I examined the effect of genome editing technologies on future generations. The use of GGE in research will greatly increase our knowledge of development and could lead to novel treatments for disease. GGE also has enormous potential as a clinical tool. It could soon be used to prevent simple genetic diseases; and eventually to reduce the incidents of polygenic diseases. The resulted in an article titled “Gene editing and the health of future generations’, published in the Journal of the Royal Society of Medicine.

Progress beyond the state of the art and expected potential impact (including the socio-economic impact and the wider societal implications of the project so far)

"One of the driving motivations of my fellowship was to widely disseminate my work and influence policy and public debates. I aimed to disseminate my work as far as possible to increase my chances of influencing policy.

During my fellowship, I presented my work at a number of conferences. Including:

• Genome Editing Congress 2017 (Oxford)
• Bioethics in European Context (Bucharest)
• 13th World Congress of Bioethics (Edinburgh)
• Oxford-Mt Sinai Consortium on Bioethics (Oxford)
• Does Applied Ethics Need a Better Moral Philosophy? (Bucharest)
• Genome in Demand (Amsterdam)

I also made sure to increase the public exposure of my work. One way I achieved this was through numerous media appearances. I participated in a live televised debate on genome editing on BBC television, and was interviewed on TV for the station ""Russia Today"". I was also interviewed on radio for the"" BBC World Service""; and Canadian current affairs program ""The Current"". My work also featured in numerous media publications including in articles featured in ""The Guardian"", ""New Scientist"", and ""International Business Times"".

To influence policy, I have become involved with influential groups like the Hinxton Group, an international consortium of scientists, ethicists and policy experts. I was on the coordinating committee for the Hinxton group for coordinating a summit on the ethical, legal and policy implications of genome editing technologies. The end product of the summit was a position statement on the policy aspects of genome editing. The Summit was featured in international media and in scientific journals like Nature and Science.

I was one of a select few academics who was selected to provide evidence the Nuffield Council of Bioethics, special committee on genome editing in human reproduction. The Nuffield Council will provide advice to the Human Fertilisation and Embryology Authority, responsible for the regulation of genome editing technologies in the UK. Furthermore, I was also asked to present to The Netherlands Commission on Genetic Modification, an independent scientific advisory committee, responsible for giving advice to the Dutch Minister for the Environment on the risks to human health and the environment for genetic modification.

Such opportunities maximised the impact of my work, and its visibility to policy makers.

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