I recently interviewed Yves Moreau on The Bioethics Podcast, computational geneticist and professor at Catholic University of Leuven in Belgium. Moreau was profiled in Nature for his work on research ethics and holding journals accountable for publishing studies based on the collection of biometric data that was taken from vulnerable and oppressed groups in China. In November, Moreau received the Einstein Foundation Individual Award for promoting quality and transparency in research for his work in advancing ethical standards in the collection of human DNA data.

Moreau is no stranger to Mind Matters News readers. In 2021, I wrote about Moreau’s work holding U.S. companies that sell DNA sequencing technologies accountable for ensuring their products do not end up being sold to entities in Xinjiang that are on the U.S.’s sanctions list. (See here, here, here, and here.)

Our conversation about the ethics of collecting and using genetic data brought out two important themes that are often addressed here at Mind Matters News:

• What responsibility do tech companies have for ensuring their products are not used for unintended (or morally abhorrent) purposes?

• What responsibility do research journals have to address ethical concerns in research?

Business Ethics: When a Company’s Product Can Have a Dual Use

Moreau started looking into sales of genetic sequencing equipment in 2017. In our interview he said that what struck him was Thermo Fisher had supplied 40 DNA sequencers to Xinjiang, an inordinate number for a region of China that has a population of about 25 million people. Usually, a region like this would order 1 or 2 sequencers for the major cities. Massachusetts-based Thermo Fisher Scientific is the largest producer of DNA sequencing technologies. This number should have raised a red flag by the company, which keeps close ties with its suppliers.

In 2019 Thermo Fisher stopped selling DNA sequencing technology to Xinjiang. Even though the U.S. placed sanctions on selling American products to law enforcement agencies in Xinjiang, a 2021 New York Times investigation showed Thermo Fisher’s products were still being sold to Xinjiang law enforcement through third-party suppliers. Companies like Thermo Fisher have a responsibility to ensure that it is not knowingly contributing to crimes against humanity through sales of its technology. As Moreau points out, that may mean not selling to certain entities, such as the police in Xinjiang.

In January of this year, Thermo Fisher stopped selling DNA sequencing technology to Tibet as well. But Moreau told me that obtaining biometric data is part of a larger picture of surveillance of minority groups in an effort to assimilate them into the China’s majority Han ethnicity.

Holding businesses that sell products or technologies that could potentially be used for ill purposes (i.e., dual use technology) responsible for how their product is being used is not unreasonable and is part of good business ethics. For example, when ordering chemicals for a research lab, the purchaser is required to verify that they are a laboratory and explain how the chemicals will be used. Certain chemicals are always flagged. Others are flagged if it is a bulk order or an order that is out of the ordinary. Thermo Fisher should have noticed the inordinate number of sequencers that Xinjiang police were ordering. Moreau says that it is not unreasonable for a company to limit the number of sequencers that they sell to a particular entity based on what is typically used for police work.

Research Ethics: Consent from Oppressed People

The Nature article interviewed Abduwell Ayup, a Uyghur linguist who was detained while he was living in Xinjiang. He told Nature that you cannot believe signed written consent forms because “no one says ‘no’” for fear of recourse.

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. It is not just that the military or the police are conducting research, but that the military and research institutions are intertwined such that there is a real conflict of interest. Journals have a responsibility to check whether ethics committees or institutional review boards approved the research with human participants in these cases.

Moreau says that when law enforcement is involved in the collection of samples from potentially vulnerable populations, journals should investigate to ensure ethical standards, like free and informed consent, were not violated. Some journals have updated their policies to be up-front with authors that in these cases, there might be additional scrutiny.

Another red flag is that typically, when medicine and research are combined, the patient ought to receive the procedure first, then after tissue or blood samples are taken the patient is asked whether they would like to participate in research, not before. Furthermore, informed consent means consenting to how their material will be used. If their material will be used to aid the Chinese government in oppressing a people group, for example, then the patient can reject participating.

These are just some of the research ethics issues we discussed during our interview. These issues are within the context of a larger effort at cultural assimilation and control over the Uyghurs and other minority groups in Xinjiang.

I asked Moreau what he thought about how different countries chose to balance freedom and safety. He said, “Usually when we say, ‘yes, we want to guarantee safety; it’s okay to give up some freedom,’ the burden, when it really gets harsh, is on some smaller groups.” In the case of China, the ethnic and religious minority groups, like the Uyghurs, Falon Gong, and the Tibetans, are not happy with the balance because it disproportionately affects their freedoms more than others. “While there is space for some cultural differences in this balance” Moreau says. “We cannot be totally extreme. Everybody wants their basic human rights to be respected.”

Listen to the whole interview at the Bioethics Podcast, here.