I recently interviewed Yves Moreau, a computational geneticist and professor at the Catholic University of Leuven in Belgium, on my bioethics podcast. Moreau's profile is as follows: Nature It was recognized for its work on research ethics and holding journals accountable for publishing research based on the collection of biometric data from vulnerable and oppressed groups in China. In November, Moreau received the Einstein Foundation Individual Award for Promoting Quality and Transparency in Research for her work in advancing ethical standards in human DNA data collection.
Moreau is no stranger Mind Matters News Dear readers. In 2021, I wrote about Mr. Moreau's efforts to hold U.S. companies selling DNA sequencing technology accountable for ensuring their products are not sold to companies in Xinjiang on U.S. sanctions lists. Ta. (See here, here, here, and here.)
Conversations about the ethics of collecting and using genetic data have revealed two important themes that often come up here. Mind Matters News:
- Do technology companies have a responsibility to ensure that their products are not used for unintended (or morally repugnant) purposes?
- What responsibility do research journals have to address ethical concerns in research?
Business Ethics: When a company's products can have dual uses
Moreau started looking into selling genetic sequencing equipment in 2017. What shocked him in our interview was that Thermo Fisher had supplied Xinjiang with his 40 DNA sequencers. This is an outrageous number for a region of China with a population of about 25 million people. Typically in such regions, he orders one or two sequencers for major cities. Massachusetts-based Thermo Fisher Scientific is a leading manufacturer of DNA sequencing technology. The numbers should have raised red flags for the company, which maintains close relationships with its suppliers.
In 2019, Thermo Fisher stopped selling DNA sequencing technology to Xinjiang. US imposes sanctions on sales of US products to Xinjiang law enforcement agencies in 2021 new york times Investigation revealed that Thermo Fisher products are still being sold to Xinjiang police through third-party suppliers. Companies like Thermo Fisher have a responsibility to ensure that they are not intentionally complicit in crimes against humanity through the sale of their technology. As Morrow points out, that may mean not selling to certain organizations, such as police in Xinjiang.
In January, Thermo Fisher also stopped selling DNA sequencing technology to Tibet. However, Moreau said the capture of biometric data is part of a larger picture of surveillance aimed at assimilating ethnic minorities into China's Han majority.
It is not unreasonable and appropriate business ethics to hold companies that sell products or technologies that can be used for malicious purposes (i.e., dual-use technologies) responsible for how their products are used. is part of. For example, when ordering chemicals for a laboratory, the buyer must identify the laboratory and explain how the chemicals will be used. Certain chemicals are always flagged. Other orders that are large or unusual are flagged. Thermo Fisher should have realized that Xinjiang police were ordering an unusually large number of sequencers. Morrow says it's not unreasonable for a company to limit the number of sequencers it sells to a particular organization based on what is typically used in police work.
Research Ethics: Consent of Oppressed People
of Nature This article interviewed Abduwel Ayup, a Uighur linguist who was detained while living in Xinjiang.he said Nature A signed written agreement cannot be relied upon because “nobody says 'no'” for fear of compensation claims, he said.
Like the Kazakhs and other Turkic minorities in Xinjiang, the Uyghurs have lived for centuries at the crossroads where East and West meet along the famous Silk Road trade routes, making them unique in their ancestry and genetics. It would be interesting to study from this perspective. But what the Chinese study raises a red flag about is the sheer volume of forensic genetics papers on Uyghurs and Tibetans. Although Uyghurs make up 1% of China's population, Moreau says that of the 500 Chinese genetics research papers his team has reviewed, one in five involved Uyghur genetic data in some way. He said that he was
Additionally, most of the papers identified by Moreau have officials from the Chinese Public Security Bureau or other law enforcement agencies as co-authors. It's not just that the military and police are conducting research, but that the military and research institutions are intertwined to the extent that there is actually a conflict of interest. In these cases, the journal is responsible for verifying whether an ethics committee or institutional review board has approved the research involving human participants.
Morrow said that when law enforcement agencies are involved in collecting samples from potentially vulnerable populations, the journal should use the tools to ensure that ethical standards such as free and informed consent are not violated. He says it needs to be investigated. Some journals have updated their policies to provide advance notice to authors of the potential for additional scrutiny in such cases.
Another red flag is that when medicine and research are combined, patients typically need to undergo the procedure first and then receive treatment. rear Patients will be asked if they would like to participate in the study before any tissue or blood samples are taken. Additionally, informed consent means agreeing to how the material is used. For example, patients can refuse to participate if their materials are used to support the Chinese government's repression of people's organizations.
These are just some of the research ethics issues discussed during the interviews. These issues come within the context of large-scale efforts to assimilate and control the culture of Xinjiang's Uyghurs and other ethnic minorities.
I asked Moreau what he thought about how different countries have chosen to balance freedom and security. “Usually when we say, 'Yes, we want to ensure safety,' we want to ensure safety,” he said. When you say, “It's okay to give up some freedoms,” you end up putting the burden on some small group when the going gets really tough. ” In the case of China, ethnic and religious minorities such as Uighurs, Farongong, and Tibetans are not satisfied with this balance because it disproportionately affects their freedoms more than other groups. “There is some room for cultural differences to enter into this balance,” Morrow says. “You can't go completely extreme. Everyone wants their basic human rights to be respected.”
Listen to the full interview on the Bioethics Podcast here.
