Our country issues ethical guidelines to regulate the research on human genetic data.

On May 25, the Ministry of Science and Technology released the "Ethical Guidelines for Human Genetic Data Research," aiming to regulate the behavior of human genetic data research, effectively protect the legitimate rights and interests of research participants and related groups, and promote the healthy development of human genetic data research. The guidelines were developed by the Research Committee of the National Science and Technology Ethics Committee's Subcommittee on Life Science Ethics, and clearly define human genetic data as various types of data obtained from human biological samples or derived from them that can directly reflect human genetic information. With the rapid development of gene sequencing, omics technologies, and data analysis methods, research related to human genetic data continues to deepen, providing important scientific support for biomedical research, disease prevention, and precision medicine. At the same time, human genetic data, due to its special attributes of identifying individuals, correlating with family and populations, and having intergenerational impacts, may raise multiple complex ethical, legal, and social issues related to scientific activities. According to the guidelines, conducting scientific activities related to human genetic data should follow the basic principles of promoting well-being, respecting autonomy, controlling risks, avoiding harm and misuse, and ensuring fairness and justice. Specifically, activities should aim to promote human health, improve disease prevention and treatment levels, enhance social public interests, and human health and well-being. For applications that may involve significant uncertainties, cross-border diffusion risks, or intergenerational impacts, a cautious approach should be taken, conducting thorough risk assessments before implementation and adopting stricter risk control measures. Adherence to scientifically reasonable, legitimate, and minimally necessary requirements, respecting and protecting individuals' legitimate rights, is also emphasized in the guidelines. It is further clarified in the guidelines that efforts in human genetic data-related scientific activities should enhance genetic privacy protection. Data mining or utilization should not be carried out for the purpose of invading privacy. When conducting data mining, analysis, and applications, the privacy of research participants and related groups should be strictly protected, ensuring that relevant processing activities are conducted within the scope of informed consent and ethical review approvals. Throughout the entire process of scientific research and technological development, appropriate privacy protection measures should be taken based on the sensitivity and risk level of the data. Experts note that the implementation of the guidelines will effectively guide human genetic data research in China to proceed steadily on a regulated track, ultimately achieving a dynamic balance between releasing the potential of technological innovation and fulfilling ethical responsibilities.