BEIJING, May 26 — China's Science and Technology Ministry issued ethical guidelines for human genetic data research today, 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.
Xinhua reported that, 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 on 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 related research activities may pose complex ethical, legal, and social issues.
The guidelines state that scientific activities involving human genetic data should adhere to the basic principles of promoting well-being, respecting autonomy, controlling risks, doing no harm, preventing abuse, and 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.
The ministry also noted that those engaged in scientific activities involving human genetic data should strengthen protections for genetic privacy.
Data mining or utilisation shall not be conducted to violate privacy.
Throughout the scientific research and technological development process, corresponding privacy protection measures should be implemented based on data sensitivity and risk level, in accordance with the guidelines.
