The European Society
of Human Genetics

News details

ESHG's statement to China’s mass collection of human DNA without informed consent

China’s mass collection of human DNA without informed consent offends against international regulations.

Two years ago, ESHG condemned the collection of DNA from ordinary individuals in China as part of an oppressive programme of surveillance and control of the Muslim Uyghur population in Xinjiang. Since then, both the size and the evidence of the misuse of this database have been growing.  The around 10 million Uyghurs are already suffering state repression. All passport applicants are now required to provide DNA samples, irrespective of whether or not they are suspects in a criminal case. This is in total contradiction to all existing regulations and safeguards concerning the collection of DNA samples from individuals.

DNA technology is in itself neutral and has legitimate and beneficial applications in many areas of healthcare when used ethically with informed consent, and in forensics when used in an appropriate legal framework. But collection of DNA without the subject’s full, informed consent can only be justified in extremely limited circumstances, for example in order to solve a very serious crime. A collection of samples from individuals where no such consent has been given, or where it has been obtained by extortion, has been ruled illegal by many international bodies, and the very existence of such a database is dangerous.

Once more, ESHG calls on the Chinese government to follow in the footsteps of all responsible authorities and ensure that human DNA is collected only from individuals suspected of having committed serious crimes; obtaining and documenting informed consent is an essential cornerstone of the proper research use of DNA samples. We applaud the reported action of the ThermoFisher company in refusing to supply its equipment to Xinjiang, and also call on other companies providing the technology used in this collection to halt sales to Chinese police forces until the issue has been resolved satisfactorily, i.e. that human rights are no longer being violated in this way.