Joint Press Release of CCNE, DER and NCOB

Joint Statement of Ethics Councils from France, Germany and the United Kingdom on the Ethics of Human Germline Intervention

Governments and stakeholders around the world are urged to put ethical considerations at the centre of any developments in global governance of heritable human genome editing, in a new statement published today.
03/03/2020

The available methods of human heritable genome editing are not yet considered safe enough for clinical use, but the three councils wish to ensure that before they reach this point more attention is given to fundamental ethical questions and principles.  Only in this way can global dialogue and governance of heritable genome editing proceed on sound ethical grounds.

In a letter published in Nature today, the Chairs of the three Councils, each of which has produced its own report on genome editing, highlight these key points from the joint statement:

"We call on governments and stakeholders around the world to take the following action:

  • All jurisdictions to bring heritable genome editing unambiguously within the control of relevant public authorities and to make its abuse subject to appropriate sanction .
  • No clinical attempt to use heritable genome editing until there has been broad societal debate about the acceptability of the interventions in question.
  • No further attempts at clinical use should be made before research has reduced the considerable uncertainty about the risks of clinical use to an acceptable level.
  • Before clinical trials or applications are permitted, the risks of adverse effects for individuals, groups and society as a whole must have been appropriately assessed and measures must be in place to monitor and review these.

We all consider it essential that any ethically permissible application of human genome editing should not increase disadvantage, discrimination or division in society.

The large range of conceivable applications and their implications for families, society and future generations, calls for appropriate, cautious, responsible and transparent governance.

We encourage all participants in debates around heritable genome editing and the respective decision makers to reflect on the examples of ethical deliberation provided in our individual reports."

Notes to Editors

1. The joint statement is published at:
France – https://www.ccne-ethique.fr/en/actualites/opinion-133-ethical-challenges-gene-editing-between-hope-and-caution
Germany – https://www.ethikrat.org/fileadmin/Publikationen/Ad-hoc-Empfehlungen/englisch/joint-statement-on-the-ethics-of-heritable-human-genome-editing.pdf
UK – https://www.nuffieldbioethics.org/news/joint-statement-on-the-ethics-of-heritable-human-genome-editing

2. The Correspondence published in Nature will be available from 10am UK time on Tuesday 3 March at: https://www.nature.com/articles/d41586-020-00614-3

3. Full publications of the three Councils are as follows:
CCNE (2020) Opinion 133 on Ethical Challenges of Gene Editing: Between Hope and Caution (https://www.ccne-ethique.fr/en/actualites/opinion-133-ethical-challenges-gene-editing-between-hope-and-caution)
Deutscher Ethikrat (2019) Intervening in the Human Germline (https://www.ethikrat.org/en/topics/medizin-und-gesundheit/interventions-in-the-human-germline)
Nuffield Council on Bioethics (2018) Genome Editing and Human Reproduction: social and ethical issues (https://www.nuffieldbioethics.org/publications/genome-editing-and-human-reproduction)

4. In France, Germany and the UK heritable genome editing is prohibited by law, but the situation is different in other jurisdictions, where the rules may be unclear, unenforced, or non-existent. Despite widespread condemnation of the actions of a Chinese researcher whose work resulted in the birth of genome edited twins in 2018, other scientists have already announced plans to attempt heritable human genome editing.

Media contacts

France:
Marie-Christine Simon, CCNE
Email: marie-christine.simon@comite-ethique.fr
Tel: +33 (0)1 42 75 68 29

Germany:
Ulrike Florian, Deutscher Ethikrat
Email: florian@ethikrat.org
Tel: +49 (0)30 20370 246

UK:
Sarah Walker-Robson, Nuffield Council on Bioethics
Email: swalker-robson@nuffieldbioethics.org
Tel: +44 (0)20 7681 9619