When it comes to human DNA research, Einstein Foundation Award winner Yves Moreau is an advocate for ethical standards. By drawing attention to potential abuses, he hopes to foster a cultural change in science and engineering education, encouraging researchers to consider the consequences of their discoveries. 
 

Belgian engineer Yves Moreau has spent decades leveraging massive data sets to study genetics and biology. But more recently, he has developed a reputation as an advocate for data privacy – taking on national governments and multinational corporations while highlighting the ways personal data can be used and abused. 

Moreau, a professor at the University of Leuven, is a specialist in big data sets, particularly the combination of genetics and medicine. Using the DNA of hundreds of thousands of patients to pick out patterns, he’s co-authored high-impact research on the detection and treatment of rare genetic disorders, often so-called “orphan” diseases that might otherwise remain untreated because they’re too uncommon to interest large pharmaceutical companies. He’s also developed ways to screen for genes that signal higher risk for diseases ranging from type 2 diabetes to Alzheimer’s. The research demonstrates the value of collecting and analysing genetic data on a large scale. 

At the same time, nearly two decades spent working closely with clinicians instilled a deep respect for medical ethics and patient privacy. Moreau adapted his algorithms to ethical rules his physician colleagues had already spent years discussing and developing, part of an effort to balance research needs with the privacy concerns of patients. He developed privacy-preserving platforms for data analysis to comply with legal frameworks put in place to prevent the abuse of genetic information. “Because of that exposure, I became interested in privacy issues,” Moreau says. “But for most of my career, I was happy to live in a protected bubble and be an engineer working on solving tough math problems.” 

That changed in 2015, after a colleague sent him a news story about plans by the Kuwaiti government to create a DNA database of everyone in the country – from citizens to travellers passing through for a few days. “I thought, ‘that sounds like a terrible idea,’” Moreau recalls. “It was just setting up surveillance for its own sake, for goals that were unclear.” A database like that might be used to discriminate against people with pre-existing health conditions, for example, or simply violating their innate right to privacy. Moreau worked with Kuwaiti lawyers and other academics to call attention to the proposal. Within months, the country’s parliament scrapped the law. His success came as a surprise. “I didn’t think political pressure could have that kind of an impact,” Moreau says. 

His next project, begun in 2017, was a bigger challenge. Collaborating with the NGO Human Rights Watch, Moreau documented Chinese efforts to create a DNA database in the province of Xinjiang. Public procurement documents showed the government was buying large numbers of DNA sequencers, enough to capture DNA data on an industrial scale. Residents, meanwhile, had to provide DNA samples, fingerprints, and voice scans to get passports. “There was a clear plan to make a DNA database of Xinjiang,” Moreau says. “All of the evidence could only be explained as a mass DNA sequencing program.” Beyond violating the right to privacy, recognized as part of the United Nation’s Universal Declaration on Human Rights, such data could for example be used to persecute people who had more children than the Chinese government allowed. 
 

“We have to decide as a society what level of surveillance we want to accept. The challenge is to mitigate risk and find a sweet spot between benefit and risk.” (Yves Moreau) 
 

Moreau contacted gene sequencer manufacturers, asking them not to sell equipment to the Chinese government. His efforts brought the issue to the attention of lawmakers in the US and Europe. In 2019, Thermo Fisher – one of the world’s largest manufacturers of genetic sequencing technology – announced that it would stop selling and servicing equipment to the police in Xinjiang. 

More recently, Moreau has called attention to China’s efforts to collect and process biometric data like facial scans and fingerprints on a mass scale, arguing that people in Xinjiang are not in a position to provide informed or voluntary consent to the use of their personal data. He successfully pressured scientific journals to reject or retract papers on facial recognition research based on Chinese government data or co-authored with Chinese government officials. “I wanted to use these cases to open up a discussion on mass surveillance, which is one of the core challenges of the 21st century,” Moreau says. 

Moreau’s no privacy purist. His decades of work in the medical field show that DNA databanks can save lives. And he acknowledges that DNA data can play a part in tracking down criminals as well. But in his view democratic societies have to openly discuss the way data is used, and scientists must play a role in that discussion. “A lot of things are possible nowadays – and that leads to an understandable desire to collect as much data as possible,” Moreau says.

“We have to decide as a society what level of surveillance we want to accept. The challenge is to mitigate risk and find a sweet spot between benefit and risk.” 

The stakes are high, in fields ranging from biometrics and facial recognition to artificial intelligence – all of which have the potential to rapidly change society in ways that will be difficult to reverse or predict. But too often researchers don’t engage with the consequences of their discoveries. “Most scientists say, ‘we are working for the advancement of science, and don’t want to make moral judgments.’ Science stops with the use of what they’re doing,” says Michel Cosnard, a computer scientist at Côte d’Azur University in France and Einstein Foundation jury member. “Moreau looks at the implications for society too. He’s unique in that sense.” 
 

“We are changing society, so we need to engage in social debates.” (Yves Moreau) 
 

Moreau hopes for no less than a cultural transformation in science and engineering education. “In Europe, engineers have very little training in reflecting on our role in society,” he says. “They solve problems, but don’t ask questions. I’d like to foster a change in the tech community’s culture – we are changing society, so we need to engage in social debates.” 

At the University of Leuven, Moreau teaches an ethics class to engineers – something he’d like to see more of at other institutions. For him, it’s not enough to bring in a guest lecturer every once in a while, instead engineers themselves should engage, and not outsource ethics education and research. “When we delegate this work to outsiders, we create a perception this is secondary,” Moreau says. “People with a tech background will be able to relate better to tech students.” 

Cosnard hopes that by recognizing Moreau, the Einstein Foundation will send a message to researchers everywhere. “It’s a good time for such an award – to tell scientists ‘hey, you cannot continue to be in your ivory tower,’” he says. “Look out the window. What you’re doing has big implications for society.”