A boy with muscular dystrophy walks again thanks to gene therapy / Humans + Tech - #40

+ China is becoming what Orwell feared + Tech-enabled 'terror capitalism' is spreading worldwide + The age of mass surveillance will not last forever


Right in the middle of a viral pandemic, reading that a child was injected with billions of viruses sounds absurd, but in this case, the viruses were there to help. Conner Curran was diagnosed with Duchenne muscular dystrophy at the age of 4. In 2018, he was one of the first to receive a gene therapy that took over 30 years to develop.

"I can run faster. I stand better," Conner says. "And I can walk to Goldberg's — that's a bagel shop — and it's more than 2 miles and I couldn't do that before."

Patients with Duchenne have not had much hope until now. It is caused by the lack of the dystrophin gene. Jude Samulski, a gene therapy pioneer and a professor of pharmacology at the University of North Carolina School of Medicine came up with a novel solution.

In 1984 Samulski was part of the team that discovered that the adeno-associated virus (AAV) infects people without causing sickness or triggering an immune response. Samulski realized that this made AAV a perfect vehicle — a “molecular FedEx truck” as he calls it — to safely transport the missing gene into ailing muscles.

His 30-year journey into creating this viable treatment to help children like Conner is a fascinating read [npr].

There are still challenges to overcome, and it’s still unclear if children can get more than one treatment, but this in itself is an amazing achievement with the potential to positively impact the lives of children like Conner and their families.

China is becoming what Orwell feared

Xi Jinping’s China is using AI to impose social control on over 1 billion people and exporting the technology to other totalitarian regimes around the world [The Atlantic].

China already has hundreds of millions of surveillance cameras in place. Xi’s government hopes to soon achieve full video coverage of key public areas. Much of the footage collected by China’s cameras is parsed by algorithms for security threats of one kind or another. In the near future, every person who enters a public space could be identified, instantly, by AI matching them to an ocean of personal data, including their every text communication, and their body’s one-of-a-kind protein-construction schema. In time, algorithms will be able to string together data points from a broad range of sources—travel records, friends and associates, reading habits, purchases—to predict political resistance before it happens. China’s government could soon achieve an unprecedented political stranglehold on more than 1 billion people.

The systems are being tested and perfected in Xinjiang, where over 1 million Uighur Muslims have been imprisoned. They are the most surveilled people in the world. From AI-powered sensors that are embedded in purses and pant pockets to apps on their phones that constantly monitor their activity, every purchase, message, and phone call is analyzed. Social inactivity also raises alarms. Their electricity usage is monitored for any changes in usage patterns. Even details such as whether they use their back door instead of the front or changes in how often they speak to their neighbours are being monitored.

Xi seems to have used Xinjiang as a laboratory to fine-tune the sensory and analytical powers of his new digital panopticon before expanding its reach across the mainland. CETC, the state-owned company that built much of Xinjiang’s surveillance system, now boasts of pilot projects in Zhejiang, Guangdong, and Shenzhen. These are meant to lay “a robust foundation for a nationwide rollout,” according to the company, and they represent only one piece of China’s coalescing mega-network of human-monitoring technology.

The whole article is an extremely sobering read. At times it feels like science fiction more than reality and more like reading the script of an episode from Black Mirror. And they are exporting this technology to countries like Sri Lanka, Serbia, Ethiopia, Kenya, Uganda, Egypt, Mauritius, Ecuador, Bolivia, and Venezuela, among many others.

Tech-enabled 'terror capitalism' is spreading worldwide.

Like the Uighur Muslims in China, the Turkic Muslims are also being held in internment camps. They are being used to test and perfect surveillance technologies and being used as a source of cheap labour [The Guardian].

When Gulzira Aeulkhan finally fled China for Kazakhstan early last year, she still suffered debilitating headaches and nausea. She didn’t know if this was a result of the guards at an internment camp hitting her in the head with an electric baton for spending more than two minutes on the toilet, or from the enforced starvation diet.


Gulzira was one of the millions of targets of a global phenomenon we call “terror capitalism”. Terror capitalism justifies the exploitation of subjugated populations by defining them as potential terrorists or security threats. It primarily generates profits in three interconnected ways. First, lucrative state contracts are given to private corporations to build and deploy policing technologies that surveil and manage target groups. Then, using the vast amounts of biometric and social media data extracted from those groups, the private companies improve their technologies and sell retail versions of them to other states and institutions, such as schools. Finally, all this turns the target groups into a ready source of cheap labor – either through direct coercion or indirectly through stigma.

The age of mass surveillance will not last forever

A perfect article to read after the two above. Edward Snowden, who in 2013, exposed the extent of mass government surveillance on people without their consent or knowledge feels that there is reason to hope [WIRED].

It is true that we have been thrust, like Marcus Yallow and his friends, into an unequal battle. But no amount of even the most perfect surveillance, no amount of repression or rent-seeking, can or will change who we are. From brave students in Hong Kong to brilliant cypherpunks in San Francisco, there is not a day that passes without individuals searching for the means to restore and improve the systems that govern our lives. We have seen ingenuity and invention give rise to systems that keep our secrets, and perhaps our souls; systems created in a world where possessing the means to live a private life feels like a crime. We have seen lone individuals create new tools—better tools—than even the greatest states can produce. But no technology, and no individual, will ever be enough on their own to curtail for long the abuses of our weary giants, with their politics of exclusion and protocols of violence. This is the part of the story that matters: that what begins with the individual persists in the communal.

The changing of an age takes more than lasers and traffic cones: it takes the hands that hold them.

It takes you.

Quote of the week

“Companies use surveillance to discipline workers. Law enforcement uses surveillance to reinforce systemic racism and perpetuate mass incarceration. States use surveillance to enforce border logics and state oppression. Surveillance, as a concept, isn’t neutral – it is always about control.”

— a Microsoft employee, from the article, Tech-enabled 'terror capitalism' is spreading worldwide. The surveillance regimes must be stopped [The Guardian]

The surveillance articles linked in this newsletter are quite depressing but it’s crucial to be aware of these issues. I tried to end with one that provides some hope and motivation that we can fight this mass government surveillance that is proliferating around the world.

It’s not going to be a quick fight or an easy fight, but it is a worthy fight for the sake of humanity. Play your part.

I wish you a brilliant day ahead :)