The potential of genetics is perhaps unprecedented, but members of the European Society of Human Genetics (ESHG) warn in a new article that the technology may never get that far if we don’t take action now against the compulsory collection of DNA performed by multiple countries, including the United States.
“We are concerned that the growing public awareness of abusive DNA collections will have a detrimental effect on the image of genetics in the wider world,” ESHG members write in the article. “Such abuses of genetic tests and DNA collection may damage the trust citizens put into genetics and the promise of personalized medicine, and thus could impair the future of genetic research and healthcare overall.”
For example, the article authors point to the compulsory collection of DNA samples from ordinary people currently being carried out by Chinese authorities in Xinjiang province. In response, Thermo Fisher Scientific has stopped sales of their equipment to Xinjiang police forces. But ESHG says one company is not sufficient, and calls on leaders Promega and QIAGEN to follow suit.
Recently, Springer Nature retracted a 2019 paper on Y-chromosome profiling of ethnic minorities in China and another on InDel profiling, while also calling into question more than 24 others for similar concerns. ESHG acknowledges this as a step in the right direction, but says further action is needed.
“It still appears that almost half of over 1,000 articles describing forensic genetics studies in Chinese populations have at least one co-author from the Chinese police, judiciary or related institutions. It is impossible to carry out forensic population genetics research in China independently from the Chinese authorities. All this literature is thus potentially ethically tainted,” write the article authors.
Therefore, ESHG suggests publishers conduct a mass reassessment of the literature, requiring further information on consent and ethical protocols—even going so far as to ensuring a country’s ethical committee requirements actually fulfill the basic tenants of justice.
The study authors are quick to point out the problem is not limited to China. Germany’s Y-chromosome haplotype reference database contains more than 12,000 forensic Y-chromosome profiles from vulnerable Chinese populations, as well as an overrepresentation of Roma people. Among 600 Y-chromosome profiles from Bulgaria, 311 are from Roma individuals.
Meanwhile, the United States carries out compulsory DNA profiling on migrants crossing the Mexican border. In Thailand, DNA samples were taken from more than 40,000 people in 2015 as an attempt to curb insurgency by Muslim Malay rebels. More recently, DNA collection has become a mandatory part of the military conscription process for men residing in the southern part of the country.
The ESHG members express concern that these DNA abuses could affect people’s willingness to donate samples, which in turn affects genetic R&D.
“If awareness of the coercive nature of the collection of some human DNA samples becomes widespread, whether through accurate reporting or via conspiracy theories on social media, it may affect people’s willingness to donate samples voluntarily and to contribute to the research and diagnostic databases that are so important in the quest for improving and advancing medical knowledge and the treatment of diseases,” the authors conclude.