L’OMS, Organisation Mondiale de la Santé,  prend position sur le sujet de la gouvernance de l’édition du génome, genome editing, en publiant lundi 12 juillet ses “recommandations on human genre editing for the advancement of public health ». Rendus public à l’issue de deux ans de concertation (« the consultation, which spanned over two years, involved hundreds of participants representing diverse perspectives from around the world, including scientists and researchers, patient groups, faith leaders and indigenous peoples »),  les travaux se déclinent en deux principaux documents. Les propositions qui y figurent portent sur des mécanismes de gouvernance institutionnelle, nationale, régionale et aussi globale. Ils concernent aussi bien l’edition somatique que les interventions sur le génome heritable transmissibles à la descendance; et posent de claires distinctions entre les deux domaines d’application : 

• “Somatic gene therapies, which involve modifying a patient’s DNA to treat or cure a disease, have been successfully used to address HIV, sickle-cell disease and transthyretin amyloidosis. The technique could also vastly improve treatment for a variety of cancers”. L’institution mondiale insiste sur le respect de l’équité et d’égalité d’accès dans la mise en oeuvre de ces nouvelles technologies pour l’édition somatique.
• « With germline and heritable human genome editing, which alter the genome of human embryos and could be passed on to subsequent generations, modifying descendants’ traits » … “Germline human genome editing contributes to deepen our understanding of the role of specific genes and processes in early human development, physiology and diseases. However, there are important areas of ongoing uncertainty as to potential benefits and risks, and gaps in scientific understanding in such key domains as off-target effects and long-term risks“.

Sont disponibles les deux documents suivants (le troisième document Human genome editing : position paper constitue le résumé des deux autres documents) :

• Human genome editing : recommandations (47 p.). Le document détaille les recommandations pour les 9 points suivants :

  1. Leadership by the WHO and its Director-General

  2. International collaboration for effective governance and oversight

  3. Human genome editing registries

  4. International research and medical travel

  5. Illegal, unregistered, unethical or unsafe research and other activities

  6. Intellectual property

  7. Education, engagement and empowerment

  8. Ethical values and principles for use by WHO

  9. Review of the recommendations

• Human genome editing : a framework for governance (87 p.)

Ce document « draws from good practices in the governance of emerging technologies and applied them specifically to human genome editing. The governance framework, which can be implemented in different contexts, is intended to help those tasked with strengthening oversight measures, regardless of whether this is at the institutional, national, regional or international level. The governance framework identifies values and principles that help explain why governance measures may be needed and how those charged with reviewing or strengthening governance measures may undertake such a task. It reviews a set of tools, institutions and processes and puts forward seven scenarios to demonstrate how the various components of the governance framework come together in practice. The governance framework identifies a number of considerations for the successful implementation of oversight and governance measures for human genome editing ». De manière assez originale, le document  Governance framework met en scène des situations hypothétiques et les outils de gouvernance qui pourraient les accompagner : 

• A hypothetical clinical trial of somatic human genome editing for sickle cell disease proposed to take place in West Africa
• Proposed use of somatic or epigenetic genome editing to enhance athletic performance
• An imaginary clinic based in a country with minimal oversight of heritable human genome editing that offers these services to international clients following in vitro fertilization and preimplantation genetic diagnosis

La question de l’amélioration (human enhancement) de certains traits en fonction de préférences (strength-enhancing steroids to cosmetic surgeries) est envisagée, pour le milieu du sport, le milieu académique ou encore le domaine militaire  : “At some time in the future, somatic human genome editing might be able to be used to improve typical and perfectly adequate traits or to add new traits. The potential harms and benefits to individuals seeking enhancement will vary depending on a number of scientific, ethical, personal, societal and legal factors. Furthermore, at some future time, it might be suggested that heritable human genome editing could be used to reduce the number of people born with so-called undesirable traits or increase the number born with improved and possibly new so-called desirable traits. Again, the potential harms and benefits will vary depending on a number of scientific, ethical, personal, societal and legal factors, but in this instance, the potential harms and benefits will need to be assessed from the perspectives of the individuals who may be born of genetically altered embryos, their prospective parents, society and any children in subsequent generations who could inherit the genetic alteration ».

https://www.who.int/news/item/12-07-2021-who-issues-new-recommendations-on-human-genome-editing-for-the-advancement-of-public-health