A month ago, RTL Nieuws and the Dutch investigative journalism platform Follow the Money reported that academic journals had withdrawn two studies due to ethical concerns. The research made use of DNA material from Uyghur Muslims, a persecuted minority in China, which was possibly not obtained on a voluntary basis. Two researchers at Erasmus Medical Center were involved, but the board did not see any reason for taking disciplinary action.
This week, Follow the Money and RTL Nieuws produced some new incriminating data. They discovered evidence in twenty academic publications of Dutch researchers’ involvement in the development of controversial DNA databanks. The name of Erasmus MC crops up with some regularity, but the names of Leiden University Medical Center and the Netherlands Forensic Institute also appear in these studies.
Some of the studies focused, for example, on how you can predict what someone will look like from traces of DNA. The method is used in the Netherlands to solve criminal investigations, but in China the technology has also been used in actions against minorities and political opponents of the current regime. Erasmus MC denies that this is possible with this type of research.
Ten of the twenty studies are alleged to have been partially funded by the Chinese police. Erasmus MC countered by stating that only Chinese researchers received that funding.
The revelations have led to a political outcry in this country: D66 wants to launch a parliamentary review of the issue, and VVD proposed that the Minister should take action if the universities can’t see the problem with this type of research. MPs fear that “Dutch fingerprints will be found on instruments of oppression”, Follow the Money reports.
What the issue particularly reveals is that we have to pay more attention to the ethical impact of academic research; that’s the response of Peter-Paul Verbeek, philosopher and chair of the Royal Netherlands Academy of Arts and Sciences’ Freedom of Academic Practice Committee.
While it’s true that many university faculties have ethical committees in place, they are primarily concerned with the ethics of the research process itself: “If research will be carried out on people or other living things, they have to provide ethical grounding for their methodology.”
But, according to Verbeek, the real problem is bigger than the question of whether the research methodology itself is ethical: “The issue also entails the potential impact of the research and the question of whether it is likely that research results will be used for purposes that are ethically unacceptable.”
He believes that, in the first place, researchers are themselves responsible for the consequences of their published research: “Academic freedom also entails responsibility.” Most of the time, researchers have a good sense of this responsibility, Verbeek asserts. “Many academics are driven not only by intellectual curiosity, but also by social engagement.”
But he also believes that they need better support, so that making a balanced decision doesn’t just depend on their individual awareness or even level of courage. In his opinion, this can be effectively done by expanding the tasks assigned to academic ethics committees. “They should look beyond the research method to review the impact of the research and questions concerning safe use of information.”
Is it really necessary for the Minister to take action, as VVD has proposed? “A government that gets too involved in the details of academic work ultimately undermines scientific endeavour”, Verbeek warns. But if laws have been violated, the government must step in. Additionally, according to Verbeek, it can’t do any harm if the government asks universities to subject what they produce “constantly to ethical review and to set up competent instruments for doing so”.
Response Erasmus MC
In a response to this article, Erasmus MC states that the DNA samples were collected in a manner that meets ‘the applicable ethical standards’. “In an international collaboration with other research institutions, we used datasets collected by international academic institutions in accordance with the applicable standards. Among them was an Uyghur dataset, contributed by internationally respected Chinese academics at a time when nothing was known about oppression of Uyghurs in China. The samples had been collected with informed consent and under academic ethical approval.”
“We did this because in general this science calls for the complete human spectrum, i.e., inclusion of as many ethnic groups as possible. Because this science is about genetic findings in Europeans, the Uyghur dataset was used along with data from other ethnic groups to replicate the European findings. The Uyghur genome consists of 50 percent European and 50 percent Asian ancestry. We were able to read the informed consent statements, both in Chinese and in English translation. Thus, the ethical review had indeed been met. Erasmus MC has never worked with data from institutions affiliated with the Chinese Ministry of Security or the Chinese police and strongly disapproves of their use,” a spokesperson wrote.
When asked whether anything should change in the way of ethical review, the spokesperson replied negatively. “For the time being, we will continue to cooperate with academic institutions in China. Naturally, we work under the internationally applicable ethical guidelines.” Erasmus MC agrees with the call of various political parties in the Dutch parliament to stop DNA research with Uyghur samples. “The international partnership, of which Erasmus MC is one of the affiliated research institutions, stopped using this Uyghur data at the beginning of 2020, given the social unrest about this and the vulnerability of the target group. We can therefore fully endorse the appeal of the members of parliament.”