WHO publishes guidelines for human genome editing

The World Health Organisation (WHO) has published new guidelines for the governance of genome editing in humans.

The publications are the work of the WHO's Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing, which was set up in 2018 as a response to the birth of genome-edited twins in China (see BioNews 979).

'These new reports from WHO's expert advisory committee represent a leap forward for this area of rapidly emerging science,' said Dr Soumya Swaminathan, chief scientist at WHO. 'As global research delves deeper into the human genome, we must minimise risks and leverage ways that science can drive better health for everyone, everywhere.'

The committee considered in detail the specific challenges that apply to different applications of genome editing, most notably somatic genome editing for children and adults, somatic genome editing in utero and heritable human genome editing. Somatic genome editing in children and adults is discussed as an alternative to gene therapy to provide relief or cure for genetic conditions, and some such treatments are already in clinical trials (see BioNews 1102). The committee also considered epigenome editing and future possibilities for human enhancement.

In all cases, the reports advise decisionmakers to consider a number of ethical values and principles including transparency, inclusiveness, social justice, non-discrimination and respect for persons, as well as promoting evidence-based regulation and supporting evidence-based research.

The framework for governance uses seven 'scenarios' to illustrate how this advice can be used in practice. These include somatic genome editing treatments for diseases such as sickle cell, the potential for athletic enhancement, using genome editing before birth to treat cystic fibrosis, and genome editing in embryos.

'The committee has outlined an incredibly helpful and practical governance framework that supports continued development of basic research and clinical applications of human genome editing while acknowledging the complex considerations and challenges in the application of emerging technologies' said Professor Kathy Niakan from the University of Cambridge.

Sarah Norcross, director of the Progress Educational Trust (PET) – the charity that publishes BioNews – said: 'PET is delighted that the WHO sees the potential of genome editing to avoid, prevent, treat and cure disease, and has set out how to harness this fast-moving technology safely and ethically.

'Where applications of genome editing are less contentious – for example, therapies involving postnatal somatic genome editing – the WHO has correctly emphasised that there is still a need for high standards and equitable access,' she said.