While human genome editing technology has made it possible to treat rare diseases, it also carries risks. The World Health Organization (WHO) issued recommendations on Monday to establish human genome editing as a tool for public health, with an emphasis on safety, effectiveness, and ethics.
Human genome editing could lead to faster and more accurate diagnosis, more targeted treatments, and the prevention of genetic disorders.
Somatic gene therapies, which involve altering a patient’s DNA in order to treat or cure a disease, have been used successfully to treat HIV, sickle cell disease, and transthyretin amyloidosis.
The technique could also significantly improve cancer treatment for a wide range of cancers. However, there are some risks, such as germline and heritable human genome editing, which alter the genome of human embryos and could be passed on to subsequent generations, modifying the traits of descendants.
“Human genome editing has the potential to advance our ability to treat and cure disease, but the full impact will only be realised if we deploy it for the benefit of all people, instead of fuelling more health inequity between and within countries,” WHO Director General, Dr Tedros Adhanom Ghebreyesus, said in a statement.
The reports posted today provide recommendations on the governance and oversight of human genome editing in nine discrete areas, including human genome editing registries; international research and medical travel; illegal, unregistered, unethical, or unsafe research; intellectual property; and education, engagement, and empowerment.
The recommendations are focused on system-level improvements that are required to build capacity in all countries to ensure that human genome editing is used safely, effectively, and ethically.
The reports also provide a new governance framework that identifies specific tools, institutions and scenarios to illustrate practical challenges in implementing, regulating and overseeing research into the human genome. The governance framework offers concrete recommendations for dealing with specific scenarios such as:
“These new reports from WHO’s Expert Advisory Committee represent a leap forward for this area of rapidly emerging science,” said WHO’s Chief Scientist, Dr Soumya Swaminathan. “As global research delves deeper into the human genome, we must minimize risks and leverage ways that science can drive better health for everyone, everywhere.”
What’s next
WHO will: