ENVI II Action Plan

Motion for an Action Plan by the Committee on Environment, Health and Food Safety II

With recent developments in medical technology, genome editing opens up the possibility of heritable modification of our genetic composition, to either heal a genetic illness or alter physical traits. How should the EU approach these new possibilities in the field of research and practical application?

Submitted by: Jesse Hendrickx (NL), Olga Kyriakoudi (CY), Amanda Laulainen (FI), Oliwia Łatka (PL), Miloslava Patzeltová (CZ), Marta Seredyńska (PL), Pavlos Xeniadis (GR); Eva Thorshaug (Chairperson, NO)

Context

The practical implementation of human genome editing has raised many social, ethical and religious concerns, yet the lack of a public debate regarding potential misuse is striking. The absence of a comprehensive European legal framework and the differing approaches Member States have towards genome editing is cause for concern as current legislation often does not entirely reflect the interests of the scientific community, posing an obstacle to research rather than serving as a guidance for it. Finally, there is minimal research on the possible off-target effects of genome editing and its hereditary nature, with little research being conducted at the moment due to restrictive national and European laws.

The European Youth Parliament recommends taking the following actions on the

Individual and local level

  1. Recommends Member States encourage women undergoing (IVF) therapy to donate their surplus egg cells for research purposes whilst ensuring that they have been duly informed about their right to give or refuse consent; 
  2. Suggests Member States include the topic of human germline editing into their national school curricula whilst facilitating visits from student ambassadors and scientists; 
  3. Encourages Member States to organise public town halls on the issue of germline modification and invite the opinion of scientists and patient groups;  

National level

  1. Urges Member States to take the necessary steps in ensuring greater coherence of national legislation beyond the minimum common standard provided in the Convention on Human Rights and Biomedicine (ETS No 164) (Oviedo Convention), allowing the EU to take a leading role internationally; 
  2. Invites Member States to initiate public information campaigns about the developments in the field of human germline modification, raising the level of public debate; 
  3. Strongly recommends Member States to ensure that human germline modification for treatment purposes is covered by national healthcare systems in case of future permission of medical applications; 

European level

  1. Designates the Directorate-General for Research and Innovation (DG RTD) of the European Commission to initiate a Directive permitting pre-clinical research on human germline editing, as well as the creation of embryos for research purposes and prolonging the standard storage period;  
  2. Instructs the European Medicines Agency (EMA) to organise annual multidisciplinary conferences with governmental and scientific participants aiming to homogenise research and evaluate ethical matters regarding human germline modification; 
  3. Asks the EMA to further develop its network of national competent authorities to accelerate the exchange of information and facilitate greater cooperation between Member States regarding research on human germline modification;
  4. Calls upon the contracting parties to amend the Oviedo Convention to allow the creation of embryos explicitly for research purposes.

Main aims

The main aim of the Action Plan is to promote and facilitate the development of genome editing technology in a manner that is safe, ethical and equally accessible for all European citizens. To ensure this, it is necessary to establish a common European legislative framework that delineates the boundaries of scientific research without being excessively restrictive and allowing for some room for Member States where that is needed. The promotion of genome editing should be done in a manner that does not exacerbate existing social differences and should provide a clear distinction between treatment and enhancement. Finally, more public discourse where both patient groups, scientists and legislators are present is needed to combat existing social stigma.