Yves Moreau

Geneticists map the knowledge they have gained, for example in relation to the prevalence of hereditary diseases. I feel that there is no awareness that this is dangerous because maps are political objects. When you start drawing precise maps, someone always starts drawing boundaries. If we want this research, we have to accept that we have a responsibility to society. If we see that the data is being instrumentalized in a very stigmatizing and discriminatory way, then we as scientists have a duty to intervene.

"Research ethics is not just about complying with the formalities of the law - it goes far beyond that. And when there are obviously so many ethical problems with these studies, it is an astonishing announcement. It feels as if the university has thought that now that the researcher with the most problematic connections to China's authorities is no longer associated with the university, the matter is over," he says, referring to the Chinese researcher who left his position as postdoc at Copenhagen's University in 2020.

Statement by the European Society of Human Genetics and the British Society for Genetic Medicine. Cosigned as a member of the Policy and Ethics Committee of the European Society of Human Genetics.

Maar een beweging naar morele onverschilligheid kan zich vlug voordoen. Als onderzoek met dubbel gebruik of militair onderzoek aanvaardbaar wordt in een immens onderzoeksprogramma zoals Horizon Europa, schept dat de indruk dat dit sociaal en moreel aanvaardbaar is. De morele verantwoordelijkheid voor de gevaren van een technologie wordt dan doorgeschoven naar diegenen die aan toepassingen werken. De onderzoekers worden zo van hun verantwoordelijkheid ontheven.

On voit qu’on est face ici à une question essentielle pour l’Union européenne : un programme de recherche majeur exclusivement focalisé sur la recherche civile doit-il dans le futur servir en partie à soutenir le secteur de l’armement ? Une telle question nécessite un large débat public et démocratique. La Commission semble avoir déjà décidé à la place des citoyens européens et préférer ne pas s’encombrer d’un tel débat.

When it comes to BGI’s prenatal tests, Moreau says that some technical considerations are important, namely that: “when carried out as designed, they do not provide detailed or even clear information about the entire genome of the mother or the foetus.” However, given that BGI sends samples for testing in Hong Kong, the question for Moreau is whether a patient wants their DNA sample “to potentially end up somewhere in China, where it's really hard to control what happens with it?”

Many of the big publishers take this too lightly. They make great speeches about ethical principles, but when violations of these rules are discovered, they want to sweep it under the rug. It is ethical laundering of the research, says Yves Moreau, professor of bioinformatics at the prestigious university KU Leuven in Belgium. For several years, Moreau has warned about unethical genetics research that deals with vulnerable groups in China. So far, 33 studies have been retracted as a result of his revelations, but it has been a struggle.

Brussel (Khrono.no): Professor i bioinformatikk Yves Moreau ved Universitetet KU Leuven i Belgia har varslet om totalt 102 studier han mener bryter de etiske retningslinjene for akademia. 33 studier er trukket, sju saker er lukket etter gjennomgang, og ytterligere 62 saker undersøkes fortsatt. 24 av disse artiklene er nå merket med «uttrykt bekymring» (expressions of concern) av forlagene.Mange av studiene har til felles at de er genetiske studier av utsatte minoritetsgrupper i Kina, blant annet...

Professor Yves Moreau points out that conducting clinical trials in an area of ​​repression is not a trivial matter. Yves Moreau said: "The ethics of conducting any form of clinical trial in a repressed region is a question of quality, and it's not one that can be ignored. I believe that this is not a matter that the US Food and Drug Administration is considering urgently, but rather considering how to take action.

Belgian professor of engineering Yves Moreau from the University of Leuven is a tireless critic of the unethical handling of DNA samples from Chinese minorities. In 2016 he became aware that DNA profiles were being created in Xinjiang as part of the regular passport registration process and offered his expertise to the Chinese branch of Human Rights Watch. Since then, he has been alerting editors of genetics journals to questionable articles and to the fact that ethics claims cannot be trusted when Chinese security agencies are involved in research. Moreau says scientific publishers should not accept papers if the collection of biometric data, including DNA and facial scans, is part of a system of repression.

De son côté, Yves Moreau, professeur de bio-informatique à la KU Leuven, en Belgique, s'inquiète des recherches menées en génétique médico-légale des populations. “En analysant 529 articles chinois publiés entre 2011 et 2018, j'ai constaté que 1 publication sur 5 concernait les Ouïgours, et 1 publication sur 6 les Tibétains, alors que ceux-ci ne représentent respectivement que 1 % et 0,5 % de la population chinoise.

L’intelligence artificielle est appelée à s’immiscer dans la majeure partie de nos interactions numériques. Avec sa capacité à produire instantanément un « baratin » plausible adapté aux préférences de chacun, quels sont les risques que l’intelligence fausse nos interactions sociales, voire mine nos démocraties ?

Let's take a study in which citizens' position data collected from smartphones is made anonymously available to scientists by the network operator, for example to research traffic flows in cities. But even if this data is provided anonymously, it is quite easy to assign the data to specific people. I just have to look at where the cell phones are at night and most of the day. Then I know where a particular person lives and where he works. These are meaningful correlations. And then I also know that Mr. X occasionally visits his lover on the way home. There are often simple mechanisms with which information about specific people can be derived from seemingly anonymous data. In medical research, the connections cannot be described so clearly. But even there, there are traps lurking everywhere that you have to think about.

The Uyghur people, as well as the Kazaks and other Turkic minorities in Xinjiang would be interesting to study from an ancestry and genetics perspective because they have lived for centuries at the crossroads of where the East meets the West along the famous Silk Road trading route. But where Chinese studies raise red flags is in the inordinate number of forensic genetics papers involving Uyghurs and Tibetans. Uyghurs makes up 1% of the Chinese population, yet Moreau said that out of 500 Chinese genetics research papers that his team looked at, 1-out-of-5 papers involved the genetic data of Uyghurs in some way. Additionally, among the papers that Moreau identified, most of the papers have a member of the Chinese public security bureau or some other law-enforcement entity as one of the co-authors.

CBHD Research Analyst Heather Zeiger interviews Yves Moreau, professor of engineering at the University of Leuven, Belgium. His research is located at the interface between artificial intelligence and genetics, focusing in particular on mass surveillance technology.

La bioéthique ne se résume pas à cocher rapidement des éléments sur une liste. Elle concerne des principes éthiques fondamentaux, tels que ne pas nuire aux individus et créer une valeur ajoutée pour leur bien-être. Il est également important de trouver un équilibre entre ce que l’on pense pouvoir résoudre grâce à une technologie – comme confondre les auteurs d’un crime – et ses aspects négatifs potentiels, tels que le contrôle accru sur des groupes minoritaires. Nous devons veiller à ce que les avantages ne profitent pas principalement à un camp, la majorité, au détriment des autres. Cela pose un problème éthique.

In the future, I want to tackle these issues by collaborating with experts both in STEM fields and in the social sciences to promote awareness of these issues and develop tools to educate students, researchers, and people with a scientific background on these issues. Influencing the culture and attitudes of people developing technology provides enormous leverage. I am incredibly encouraged by the interactions I have with my students, who are from a generation that is unfortunately faced with the huge challenges of climate change and environmental sustainability and realizes that business as usual is not an option. They absolutely crave such intellectual tools that will empower them to shape a fairer and more sustainable future.