By Beatrice Brown
On December 3, The New York Times broke shocking news: China has been using the DNA of Uighurs, a Muslim minority group who have been facing increased persecution, to create an image of a person’s face using a process called DNA phenotyping. The Uighur men were living in Tumxuk (a city in the Xinjiang region), which The New York Times notes being described by Chinese state news media as “one of the gateways and major battlefields for Xinjiang’s security work.” The New York Times introduced many troubling ethical issues, including the potential for increased social surveillance and thus increased “state discrimination” of this vulnerable ethnic minority, but here, I wish to focus on the issue of informed consent.
Informed consent is essential to conducting ethical research. Premised on respecting the autonomy of participants, informed consent requires that participants understand the research that they are consenting to be involved in, including potential risks and benefits of the research. However, what exactly constitutes true, valid informed consent to research is a contentious issue. There are two concerns about the validity of the informed consent process in this DNA phenotyping experiment.
The first of these concerns is whether there was even an informed consent process that occurred. The Chinese scientists claimed to have received the blood of the Uighur men in Tumxuk willingly, but The New York Times notes that Uighurs have claimed that “The government collects samples under the veneer of a mandatory health checkup program.” Furthermore, Zhou Fang, the head of the health commission in Tumxuk, stated in an interview with The New York Times that “residents voluntarily accepted free health checks under a public health program known as Physicals for All and denied that DNA samples were collected.” Although it has not been possible to confirm the validity of the lack of informed consent because of the Chinese government preventing reporters from interviewing Tumxuk residents, the ethics of a lack of informed consent is clear: it is most definitely unethical to obtain and utilize people’s DNA without their consent, especially under the auspices of a benign health check. This is negligent at best, and downright malicious and misleading at worst.
However, the more complex of these two concerns is whether true, valid informed consent to this research is actually even feasible. For one, there is a clear power dynamic at work here. The Uighurs are a vulnerable population within China: over the past three years, the Chinese government has “corralled as many as a million ethnic Uighurs, Kazakhs and others into internment camps and prisons.” The New York Times notes that those in two of the internment camps in Tumxuk certainly had no choice. Moreover, even if given a choice to participate, those in the internment camps would not have been able to provide true, valid informed consent, as there is an oppressive power dynamic in place that encourages compliance with orders and requests. But what of those who were not in internment camps? For this portion of the population, it is doubtful that valid informed consent was possible because of the social space that has been created by these roundups and the culture of fear that arises from such a situation – being fearful of being the next to be placed in an internment camp places pressure on one to obey such a request to participate in research, for fear that failure to comply will result in being interned. Because of the social climate in China, then, it is doubtful that these Chinese scientists could have received these DNA samples in a manner that comports with international standards of informed consent.
Furthermore, there seems to have been complicity from European institutions and international scientific journals in validating this research that was conducted without having obtained valid informed consent. The New York Times found that at least two of the scientists received funding “from respected institutions in Europe” and that “International scientific journals have published [the scientists’ findings] without examining the origin of the DNA used in the studies or vetting the ethical questions raised by collecting such samples in Xinjiang.” Such complicity raises an important question: what is the role of the international community in upholding ethical norms in the research enterprise, such as the necessity of acquiring valid informed consent? And moreover, what should the role of the international research community be with regards to setting standards for informed consent? These are two vital questions that the research community will have to grapple with in the near future to ensure that the research enterprise remains ethical.
Beyond these questions about the role of the international research community, there are two main takeaways with regard to the future of work on informed consent. First, what exactly does valid informed consent amount to? For example, what role do external factors, such as the exacerbated power dynamic between researcher and subject in the case of vulnerable populations, play in determining the validity of consent? And second, how do increasing technological capabilities change our views of valid informed consent? With all the good that these new technologies bring, many, such as DNA phenotyping, run the risk of exploiting vulnerable populations. And beyond the risk for vulnerable populations, there is increased risk of exploiting all participants because of the increased knowledge gap between researchers and potential subjects as a result of the additional complexities of these technologies. The shock of this unethical research should spark the international research community to really consider what it means to obtain valid informed consent in an effort to prevent such exploitative research from occurring again in the future.