It has belatedly been revealed that a child participating in a gene-editing clinical trial for a rare disease has died in China.

Following the recent revelation that a 6-year-old child died after receiving gene-editing treatment, another death has come to light, bringing the safety and information-disclosure issues of researcher-initiated clinical trials under scrutiny.

According to Bloomberg and Hong Kong's Ming Pao on August 7, a young boy suffering from Duchenne muscular dystrophy (DMD) died in August of last year after participating in a clinical trial for a gene-editing treatment developed by the Chinese biotech company HuiDaGene.

The clinical trial was intended to evaluate the safety and efficacy of a treatment utilizing gene-editing technology. The deceased child was the fourth and final participant in the trial and reportedly received a higher dosage of the treatment than the previous participants.

Following the reports, HuiDaGene stated in a statement that the child suffered a severe immune response during the treatment process and died from acute respiratory distress syndrome.

The company also explained that it had reported the death to the hospital's ethics committee in accordance with regulations and plans to disclose the research results and specific details through future academic papers.

It added that the other three clinical trial participants did not exhibit the same severe symptoms.

While the company did not disclose the identity of the deceased child, the clinical trial was conducted on boys aged 4 to 8.

This case came to light about two weeks after the international scientific journal Science reported that Chinese researchers had failed to disclose in a paper the death of a 6-year-old child with a rare genetic disease following gene-editing treatment.

Regarding that incident, Chinese authorities and Shanghai Jiao Tong University School of Medicine initiated an investigation to verify the facts.

Ming Pao reported, "While China's gene therapy research is expanding rapidly, successive deaths of clinical trial participants are raising concerns over whether the regulatory and supervisory systems, safety issues, and levels of information transparency are keeping pace with the industry's development speed."

(File Photo: Yonhap News)