Moral concerns surround the acquisition and utilization of genetic data, encompassing topics like securing informed authorization, exploiting marginalized communities, and the escalating international movement toward genetic supervision
Recognizing the importance of genetic data, the Chinese government is treating genetic data as a pivotal strategic resource and is enhancing state regulation over the country’s gene banks and other genetic data repositories.
China has allocated substantial funds for its ambitions. Many experts argue that its immense population of 1.4 billion individuals offers a valuable reservoir of data.
Lately, there has been a noticeable shift as authorities are implementing stricter regulations on foreign access to this data- in contrast to the approach of many Western nations that have committed to making information available for the global exchange of information.
As of July, China’s genetic resource sector has undergone recent regulatory changes with a national survey and restrictions on foreign access. Prior to exporting overseas or sharing with foreign-controlled entities within China, one must undergo a complex application process.
Why are there restrictions on Chinese genetic data over foreign usage?
Moral concerns surround the acquisition and utilization of genetic data, encompassing topics like securing informed authorization, exploiting marginalized communities, and the escalating international movement toward genetic supervision.
Naturally, any country would consider genetic information as a strategic asset. Nevertheless, the situation is progressing to an extreme extent by declaring that the state will take on the central role of determining how the citizens should handle this form of information, both on a global and national basis.
The ban on sending Chinese genetic information overseas and safeguarding it against misuse by private entities, with simultaneous emphasis on unrestricted government access and dominion, emulates the core principle embedded in China’s fresh data privacy law.
The modifications are in sync with a growing focus on national security led by Chinese leader Xi Jinping.
Authorities have asserted that more rigorous regulations must be implemented to hinder the ‘unauthorized export’. This stance may stem from the enduring consequences of a well-known incident around the year 2000. During that time, a researcher linked to Harvard University faced accusations of misusing genetic samples from unprivileged Chinese farmers without obtaining proper informed consent.
Among the unethical cases noted by Chinese officials is that of He Jiankui, the Chinese scientist who sparked global rage by producing the first gene-edited babies in China in 2018.
Other countries like UK and USA have created large databases of health and genetic information from thousands of people but China’s approach seems otherwise. The shutting down of activities in China is part of a broader strategy to cultivate domestic development and turn attention inward.
Nonetheless, a group of few specialists has expressed concerns that this genetic hoarding might hinder international research collaboration and might boomerang on China.
Dr. Yu-Chun Li, the lead author of the study on Ice Age migration, said that many scientists, both of Chinese and Foreign origin, are already facing greater difficulties.
Multinational pharmaceutical corporations are burdened by the regulatory setup, which also obstructs international partnerships in biomedical research. International companies undertaking clinical trials in China have had to organize dedicated compliance teams to ensure they don’t violate the regulations.
A glimpse of the national genetic survey
Firstly, the task of sharing data, even within a single country faces major hurdles, such as accessing data repositories in different provinces, each with its own legal framework. Furthermore, many smaller institutions lack the essential infrastructure to effectively manage, categorize, and store genetic samples in a manner that optimally supports scientific research.
The new regulations dictate that the survey is to be conducted every five years. Regional authorities will collect data within their respective provinces and subsequently forward it to the National Ministry of Science. These guidelines prioritize the identification of significant genetic lineages and individuals from particular locals, including those with inherited illnesses or distinctive physical characteristics.
The enforcement of these protocols prompts discussion about ensuring the privacy of individuals amidst the biodata era, particularly in a nation subject to substantial digital scrutiny.
As per the guidelines, gathering genetic materials in China will uphold the ‘privacy rights’ of its donors, entail ‘formal written consent’, and follow ethical evaluation standards.
Ongoing concerns from the international arena revolve around China’s use of genetic data in law enforcement, with specific attention given to reports indicating the collection of DNA samples and biometric data from millions of residents in Xinjiang, a region housing the Uyghur Muslim community and other ethnic minorities. China has consistently denied allegations of human rights violations in Xinjiang.
In an extensive effort, the Chinese government collected blood samples from men throughout the country to construct a genetic chart of the entire male populace of the nation. The New York Times dubbed this move as a significant advancement in China’s attempts to harness genetics for controlling its population.
BGI, a prominent player in Chinese genomics, stored genetic data sourced from women worldwide who had opted for prenatal testing employing BGI kits.
The bottom line is the global significance of Chinese life sciences is evident, but it has not reached the superpower level just yet. In today’s context, the main subject of discussion is big data and its mining. Given this backdrop, imposing access restrictions would only bring harm to China.
The race to advance biosciences globally holds the potential for outstanding gains, including advancements in cancer treatments, progress in extending life, revolutionary medications, and transformative vaccines.