In Depth Report from April 29th Paris Human Gene Edit Meeting

Editor’s note. Caroline Simons attended both the April 28th (see her report on that here) and 29th Paris meetings on human gene editing/genetic modification. Today, we have her in depth report on the April 29th meeting. I have posted her piece in full with only minor edits. If you are in a rush you can skip to the last page for Caroline’s top 10 takeaways from the meeting.

By Caroline Simons

The meeting of NAS and NAM which took place in Paris on 29 April was webcast live. A recording of the presentations will be posted in the coming weeks. This blog post is my record of the presentations and an attempt to give an overall impression of the discussions.

Paris Gene Editing Meeting

Credit, Caroline Simons

This meeting is one of a series which has been organized by the Committee to assist in its examination of the ‘scientific underpinnings as well as the clinical, ethical, legal and social implications of the use of human genome editing technologies in biomedical research and medicine.’ The Committee is examining both somatic and germline genome editing. It focuses on 7 areas in particular. These relate to the current state of the science, future directions and challenges, potential clinical applications, alternative approaches, and the efficacy and risks of gene editing in humans. The Committee asks if explicit scientific standards should be established to quantify off-target genome alterations, if current ethical and legal standards for human subjects research adequately address human gene editing technologies and what are the ethical, legal and social implications of the use of these technologies in humans. The Committee seeks to identify what principles or frameworks might provide appropriate oversight for these technologies and to assess the prospect of international harmonization of policies.

The Committee will prepare a report and make recommendations later this year. This report will ‘include a focus on advice for the United States’, and will ‘provide a framework based on fundamental, underlying principles that may be adapted and adopted by any nation’.

This 3rd Consensus Study Meeting was a larger gathering than the meeting of FEAM, the UK Academy of Medical Sciences and the Académie Nationale de Médecine France which was held the previous day. Attendees included European Commission representation, prominent scientists, philosophers, ethicists and lawyers from Europe, the US, Canada, China, Singapore and Malaysia. Three panels of speakers addressed the principles underlying governance, international governance perspectives and potential applications for germline editing. The meeting wrapped up with a moderated discussion among all of the attendees.

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Meeting summary of Paris human gene editing workshop

Editors note: This is a guest post from Caroline Simons who is attending the two Paris meetings on human gene editing. For more background on those meetings see here.

By Caroline Simons

There were just over a hundred participants at the workshop organized by the Federation of European Academies of Medicine, the UK Academy of Medical Sciences and the Académie Nationale de Médicine France. That number included experts in the fields of science, medicine, law and bioethics. They came from Europe, the US and China (and, I think I may have heard, one French politician).Caroline Simons

Some were engaged in active research, others represented national academies, policy making bodies, patients, research funders and industry. I noted one participant from the US represented DARPA, a reminder that gene-editing technologies may have harmful as well as therapeutic applications. There were about a dozen journalists, of whom two may cover this event in English – Anna McKie of Research Fortnight and Oliver Moody of The Times.

Académie Nationale de Médicine

Académie Nationale de Médicine, Credit Caroline Simons

The aim of the workshop was to consider current scientific activities in the European Union (EU) regarding genome editing and the regulatory landscape across the EU member states for this research and its clinical application in humans. The stated intention was to foster discussion between experts, provide information to the public and stakeholders and to consider whether an EU regulatory framework to govern the safe and acceptable use of human genome editing is desirable, and how it could be achieved. There were no agreed conclusions or recommendations from this workshop, but many interesting presentations and observations. A paper which will draw on the workshop discussions is to be published.

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