Risks of genomic surveillance and how to stop it

Millions of people today have access to their personal genomic information. Direct-to-consumer services and integration with other “big data” increasingly commoditize what was rightly celebrated as a singular achievement in February 2001 when the first draft human genomes were published. But such remarkable technical and scientific progress has not been without its share of missteps and growing pains. Science invited the experts below to help explore how we got here and where we should (or ought

Un géant chinois de la génétique prend pied au Canada

À Shenzhen, BGI ne cache pas son obsession pour la santé de ses propres employés. Elle croit qu’ils devraient tous vivre plus de 100 ans et a même officiellement un objectif baptisé . Ils sont encouragés, tout comme leurs familles, à utiliser les produits BGI en se soumettant régulièrement à une batterie de tests génétiques et autres pour dépister des maladies telles que le cancer, les maladies cardiaques et la démence.

ESHG warns against misuses of genetic tests and biobanks for discrimination purposes

Medical knowledge is a powerful instrument that is meant for individual and collective good. Since the time of Hippocrates, we have known it should never be abused, even if serious misuses have occurred in modern history. Among the most recent examples of harm is the compulsory collection of DNA samples from ordinary people being carried out by the Chinese authorities in Xinjiang province as part of a programme of surveillance and control [1]. As members of ESHG, professionals working in genetic

The ethical questions that haunt facial-recognition research

In September 2019, four researchers wrote to the publisher Wiley to “respectfully ask” that it immediately retract a scientific paper. The study, published in 2018, had trained algorithms to distinguish faces of Uyghur people, a predominantly Muslim minority ethnic group in China, from those of Korean and Tibetan ethnicity. China had already been internationally condemned for its heavy surveillance and mass detentions of Uyghurs in camps in the northwestern province of Xinjiang — which the gov...

China: Gen-Studie zu Uiguren zurückgezogen

Genetische Daten sind mehr als nur Daten. Sie können Auskunft geben über intime Eigenschaften, und mitunter werden sie sogar gegen die Menschen verwendet, von denen sie erhoben wurden. Manche Wissenschaftler betrachten deshalb mit Sorge, was gerade in Chinas Genforschung geschieht. Dort haben sich Wissenschaftler darauf spezialisiert, Gen-Daten zu forensischen Zwecken zu erheben. Sie sollen gemeinsam mit der Überwachung von Bewegungsdaten und der verbreiteten Gesichtserkennung im öffentlichen Ra...

Study of China’s ethnic minorities retracted as dozens of papers come under scrutiny for ethical violations

A legal journal has retracted a 2019 article on the facial genetics of ethnic minorities in China for ethics violations, and the publisher, Springer Nature, is investigating more than two dozen other articles for similar concerns. The article, “Y Chromosomal STR haplotypes in Chinese Uyghur, Kazakh and Hui ethnic groups and genetic features of DYS448 null allele and DYS19 duplicated allele,” appeared in the International Journal of Legal Medicine. Three of the authors were affiliated with the

Australian experts raise security concerns about Chinese maker of Andrew Forrest Covid-19 tests

Experts and human rights groups have raised new concerns about the Chinese company at the centre of Andrew Forrest’s Covid-19 testing deal following California’s reported rejection of its equipment due to security concerns. The Australian government announced in late April that it had accepted 10m Covid-19 tests manufactured by the Beijing Genomics Institute, purchased in a $200m deal brokered by Forrest, the mining billionaire, and his philanthropic arm, the Minderoo Foundation...

L’Argent aux temps du corona

Maintenant que la tempête sanitaire de la pandémie commence à retomber, on entraperçoit la dévastation économique qu’elle laissera derrière elle. Nul besoin d’être grand économiste pour percevoir que nous ne pourrons sortir de cette crise avec les recettes classiques d’austérité. Malgré qu’en notre ère d’orthodoxie budgétaire, les invocations cardinales soient « norme budgétaire » et « contrôle de l’inflation », certaines déclarations suggèrent aujourd’hui un possible écart au dolorisme budgétai

Digital monitoring for COVID-19 epidemic control: privacy and human rights

Digital monitoring technologies have been touted as offering cheap tools to help control the COVID-19 pandemic that can be immediately rolled out at population scale. However, it is clear that this pandemic is the perfect storm for promoting the further development of the surveillance state and that some surveillance tools raise major fundamental rights issues. Controlling an epidemic is a population-level “game” that involves a myriad of unknown and random interactions between individuals. Con

Introduction: societal exit from the COVID-19 lockdown

Having appeared in China at the end of 2019, the COVID-19 epidemic has swept through the world at an astonishing speed. Never before in history had humanity been confronted with a pandemic while being so deeply interconnected as a “global village”. But the tragedy is that our ever increasing local and international physical interconnectedness has not been accompanied by a matching preparedness to the foreseen threat of rapid pandemic spread, and not even by the capacity to rapidly absorb the ava

120 humane wetenschappers willen stem in exitstrategie: 'Mens is meer dan drager van virus'

Nu we volop nadenken over het ‘herstarten van de machine’, vragen Belgische academici uit de humane wetenschappen om daarbij niet enkel een economische en medisch-wetenschappelijke logica te volgen. ‘De mens is meer dan een drager van het virus.’ Meer dan 120 academici van negen Belgische universiteiten en twee hogescholen hebben een lijvig rapport klaar. Onder de titel ‘Een maatschappelijke exit strategie’ bundelen ze vijftig beknopte papers van onder meer sociologen, antropologen, psychologen
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