China Complicates Data Use on Genetic Studies

China Makes Use of Data on Genetic Studies Difficult
The sharing of genetic resources, including biological samples such as DNA-producing organs, tissues and blood, and data collected from their sequencing, is tightly controlled in China.Credit: Paul Yeung/Bloomberg via Getty

China is tightening its grip on the use of genetic data collected from citizens, including in scientific research. According to the researchers, this method makes it difficult for scientists in the country to work with their international counterparts.

China's Ministry of Science and Technology (MOST) published a set of draft guidelines published in March.

These are biological samples such as DNA-producing organs, tissues, and blood, and data collected from their sequencing. Its content is the measures to be applied regarding the management of genetic resources.

These measures include legislation enacted in 2019 and 2021 that prohibits Chinese organizations from collecting certain types of genetic data or sharing genetic resources with foreign organisations.

University of California geneticist Jonathan Flint analyzed genetic data from humans in China and published it in Nature2015 in 1. He states that the controls are increasing.

According to government officials, restrictions should be placed on the use of genetic data.

These applications were deployed in response to companies exporting genetic data without permission. It also announced the first babies with edited genomes by Chinese researcher He Jiankui in 2018. This announcement caused a great indignation in the medical community.

Who Is He Jiankui and What Studies Has He Done?

He is a Chinese biophysics researcher who is an associate professor in the Department of Biology at the Southern University of Science and Technology (SUSTech) in Shenzhen, China.


Who is He Jiankui
Who is He Jiankui – He Jiankui, a biophysicist in China who manipulated babies' genes, was sentenced to 3 years in prison – © AP – Mark Schiefelbein

Earning her doctorate degree on protein evolution, including CRISPR, from Rice University in Texas, and learned gene editing techniques (CRISPR/Cas9) as a postdoctoral researcher at Stanford University in California.

He Jiankui became widely known in November 2018 after he claimed to have created the first genetically modified human babies, twin girls known by the nicknames Lulu and Nana.

The November 2018 announcement of Lulu and Nana, who were born in mid-October 2018, was initially lauded in the press as a major scientific advance.

However, it received widespread condemnation after a review of how the experiment was conducted. On November 29, 2018, Chinese authorities suspended research activities.

on January 21, 2019 SUSTech removed from.

In May 2019, lawyers in China reported that an edit was needed, claiming it was created by He Jiankui from the first humans to have gene-edited.

Advocates stated that anyone who manipulates the human genome with gene-editing techniques will be held liable for any related negative consequences, and they have drafted a text about it.

In December 2019, He Jiankui presented an overview of the controversy to date, including excerpts from the unpublished research paper, in the MIT Technology Review.

On December 30, 2019, the Shenzhen Nanshan District People's Court sentenced He to three years in prison and a fine of three million yuan. He Jiankui was released from prison in April 2022.

If we go back to our article;

According to Arcadi Navarro, a geneticist at Pompeu Fabra University in Barcelona, ​​many governments control how their citizens' DNA data can be shared.

But most wealthy countries encourage data exchange for research. In contrast, he adds, there is scientific exploitation in low-income countries and countries with vulnerable minority ethnic groups.

He says it is inevitable to implement strict data sharing policies similar to China's in such countries.

Shuhua Xu, a geneticist at Shanghai's Fudan University, says that while he supports the management of human genetic resources in principle, he believes some of the restrictions in the new guidelines are too stringent and will deter scientists from working in the field.

These include the requirement for a “security assessment” when sharing data with groups of more than 500 people.

Foreign agencies can collect and preserve genetic information from Chinese residents only if they cooperate with a Chinese agency that requires ministry approval.

These restrictions make it difficult for Chinese scientists to collaborate with overseas colleagues and publish work in international publications, according to the researchers.

According to Xu, obtaining permission for publications is difficult and time-consuming.

After being given permission to share the data, he published a study last year with his US colleagues on the ancient origins of a gene found in Tibetan people.

However, MOST has previously denied requests to share data with overseas collaborators for ethnic group genetic diversity and genealogy studies.

The process may have improved since Xu's last application in early 2021. The MOST website reports that it approves hundreds of applications each month this year to share data in international scientific collaborations. However, it is unclear how many were rejected.

Navarro is concerned that China's increasing control is making it harder for Chinese scientists to share genetic data for use by researchers outside of China.

However, he states that he has not seen a decrease in the number of applications from Chinese institutions to the European Genome-phenome Archive (EGA).

According to Flint, China's restrictive data sharing policies will ultimately hurt local researchers a lot. That's because these constraints will put isolated researchers "outside the human genetics community." This is an embarrassment for Flint.

Flint received a grant from the US National Institutes of Health in August 2021 to study the genetic causes of depression in South Koreans. He did not conduct his studies in China due to the strict rules in China.

Xu also said that he has been hesitant to join international genome consortia such as the COVID-19 Host Genetics Initiative in recent years due to potential data sharing issues.

However, regulations may not affect all aspects of population genetics.

Choongwon Jeong, a population and evolutionary geneticist at Seoul National University who studies ancient genomes, claims the edits have had no effect on their collaboration with Chinese researchers.

However, he is concerned that China's tightening control will jeopardize this work in the future.

Source: Nature – Wikipedia

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