WHO to Create  Genetic Research Registry

WHO to Create Genetic Research Registry

The World Health Organization (WHO) announced in late August 2019 that it will create a global registry to track research into human genetic manipulation. A WHO committee also called for a halt to all work on germline genome editing, which was used in the People’s Republic of China in 2018 to genetically modify twin baby girls.

“New genome editing technologies hold great promise and hope for those who suffer from diseases we once thought untreatable,” Tedros Adhanom Ghebreyesus, WHO’s director general, pictured, told the body’s genome editing oversight committee in Geneva.

“But some uses of these technologies also pose unique and unprecedented challenges — ethical, social, regulatory and technical,” he added.

Chinese scientist He Jiankui announced in November 2018 that he had altered the DNA of twin girls in southern China by using molecular scissors, ostensibly to prevent them from contracting HIV.

He was then fired from his university, put under police investigation and ordered to halt his work.

His announcement provoked a global backlash from scientists saying the untested procedure was unethical and potentially dangerous and in December 2018, the WHO set up an expert committee to look into the matter. About 30 nations have legislation directly or indirectly barring all clinical use of germline editing.

WHO’s Ghebreyesus emphasized that countries should not allow any further work on human germline genome editing “until the technical and ethical implications have been properly considered,” WHO said in a statement.

Accepting the recommendation of its 18-member expert committee, WHO announced plans for an initial phase of the registry to include both germline and somatic clinical trials.

Somatic mutations occur in a single body cell and cannot be inherited while germline mutations can be passed onto offspring.  Agence France-Presse