China’s Ministry of Science and Technology issued ethical guidelines for human genetic data research on May 25, aiming to effectively protect the legitimate rights and interests of research participants and related groups, and promote the healthy development of human genetic data research.
According to these guidelines, human genetic data refers to various types of data obtained from human biological samples such as cells, tissues, organs, bodily fluids and secretions that can directly reflect human genetic information.
With the rapid advancement of gene sequencing and omics technologies, as well as genetic data analysis methods, research related to human genetic data has provided crucial scientific support for biomedical research, disease prevention and precision medicine.
However, due to its special characteristics, including identifiability, family and group associations, and transgenerational impact, human genetic data and its related research activities may trigger complex ethical, legal and social issues.
According to the guidelines, scientific activities involving human genetic data should adhere to the basic principles of promoting well-being, respecting autonomy, controlling risks, doing no harm and preventing abuse, as well as ensuring fairness and justice.
Such activities should aim to promote human health, improve disease prevention and treatment, and enhance public interests and human well-being.
The principles of scientific rationality, legitimate purpose and minimal necessity should be followed, while the legitimate rights and interests of individuals should be respected and protected.
These guidelines also noted that those engaged in scientific activities related to human genetic data should strengthen the protection of genetic privacy. Data mining or utilization shall not be conducted for the purpose of violating privacy.
Throughout the entire process of scientific research and technological development, corresponding privacy protection measures should be implemented based on the sensitivity of the data and the level of risk, according to the guidelines.
Source: Xinhua News Agency
