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A month ago, the Follow the Money research platform and RTL Nieuws reported that scientific journals had two studies took of. The studies used DNA material from Uyghurs, a persecuted minority in China, and may not have been donated voluntarily. Two researchers from the Erasmus Medical Center were involved in the investigations, but the board saw no reason to take action against them.
Follow the money to RTL News came up with new incriminating material this week. They discovered the Dutch involvement in the development of controversial DNA databases in twenty scientific publications. Erasmus MC in particular plays a role, but the Leiden University Medical Center and the Netherlands Forensic Institute are also included in these studies.
chinese police
For example, research has been done on how to predict what a person looks like based on DNA traces. The method is used in the Netherlands to solve crimes, but in China the technology is also said to be used against minorities and political opponents. Erasmus MC denies that this is possible with this type of research.
Ten of the twenty studies were reportedly funded in part by the Chinese police. Erasmus MC objects that this funding only went to Chinese researchers.
This has sparked political outrage: the D66 wants a parliamentary inquiry into the matter and the VVD suggests that the minister only intervene if the universities themselves do not see the problem with this type of inquiry. It is feared that “Dutch fingerprints are on removal instruments”, reports Follow the Money.
Ethical consequences
What this issue mainly shows is that more attention is needed for the ethical impact of research, answers Peter-Paul Verbeek, philosopher and chairman of the KNAW ‘Freedom of scientific practice’ committee.
Although many faculties have ethics committees, their primary focus is on the ethics of the research process itself, he said: “If the research is done on people or other living things, it has to be. possible to provide an ethical justification.
Impact
But according to Verbeek, the problem is greater than whether the research itself was conducted ethically: “This question also concerns the possible impact study and whether it is likely that the results of the study will be used for ethically unacceptable purposes.
He believes that scientists must first and foremost take responsibility for the consequences of their research: “Academic freedom comes with responsibility”. According to Verbeek, scientists generally feel this responsibility as well. “Many scientists are not only motivated by curiosity, but also by social engagement. “
Courage
He thinks they should be better helped, so it doesn’t just depend on their individual conscience or even their courage if they make the right decisions. According to him, this can be done by broadening the missions of ethics committees. “They can then not only examine the research process, but also the impact of the research and the questions on knowledge security. “
Is it indeed necessary for the minister to act, as the VVD suggests? “A government that interferes too much with the content of scientific work ultimately undermines science itself,” warns Verbeek. But when laws are broken, the government needs to step in. Moreover, according to Verbeek, it can’t hurt if the government asks universities to “continuously ethically test what they do and put in place adequate processes for it”.
Meanwhile, the Labour Party, of VVD and CDA and the PVV questions were put to the ministers of education, justice, foreign affairs and health.
Erasmus MC reaction
In a response, Erasmus MC states that the DNA samples were collected in a manner that meets “applicable ethical standards”. “In an international partnership with other research institutions, we have used datasets collected by international academic institutes according to applicable standards. A dataset on Uyghurs, provided by internationally renowned Chinese scholars at a time when nothing was known about the oppression of Uyghurs in China, was also included. Samples were collected with informed consent and under academic ethics approval.
“This is because in general this science requires the full human spectrum, that is, the inclusion of as many ethnic groups as possible. Since this science is about genetic discoveries among Europeans, l The Uyghur dataset was used with data from other ethnic groups to replicate the European findings. The Uyghur genome consists of 50 percent European ancestry and 50 percent Asian ancestry. informed consent statements, both in Chinese and in the English translation. This meant that the ethics review had been followed. Erasmus MC has never worked with data from institutions affiliated with the Chinese Ministry of Security or the Chinese police and strongly disapprove of their use, ”a spokesperson said in writing.
When asked if the ethics testing method should change, the spokesperson replied in the negative. “For now, we will continue to work with academic institutions in China. Naturally, we work according to the ethical guidelines applicable at the international level. Erasmus MC agrees with the call from various parties in the House of Representatives to stop DNA testing with Uyghur samples. “The international collaboration, of which Erasmus MC is one of the affiliated research institutions, stopped using this Uyghur data in early 2020, given the social unrest about it and the vulnerability of the target group. We can therefore fully subscribe to the call of the deputies.
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