One family's $6 million quest for gene therapy to save their sons' lives

NASA's next lunar rover will run open-source software

Sponsored by MIT Sloan The Download Your daily dose of what's up in emerging technology High-stakes gene therapy 04.13.21 Good morning! Charlotte’s off so I have the pleasure of running through this issue of The Download. (And on my birthday no less!) Here are today's most important stories in emerging technology. Get your friends to sign up here to get the newsletter every day. One family's $6 million quest for gene therapy to save their sons' lives   High-stakes surgery: Benny and Josh are two young boys with Canavan disease, a fatal inherited brain disorder. They are buckled into wheelchairs, don’t speak, and can’t control their limbs. On Thursday April 8, in Dayton, Ohio, Benny underwent surgery for several hours. Neurosurgeons drilled bore holes into his skull and injected trillions of viral particles carrying the correct version of a gene his body is missing. The procedure marked the climax of a four-year quest by the Landsman family to obtain a gene therapy they believe is the only hope to save their kids. Limited choices: Canavan is an ultra-rare disease, so few companies are working on a cure. The family financed the daring gene treatment on their own, using funds they raised online. The experiment has cost over six million dollars so far, and financing it directly meant the Landsmans could designate their own children as the first recipients. The problem: While such “pay-to-play” trials are legal, they do raise red flags, including questions about whether parents—and financial donors—understand that most experimental treatments fail. Another risk is whether parents can really judge the risks and benefits of an experimental procedure in a “dispassionate” way, especially if they have sunk millions into the effort. Read the full story.   —Antonio Regalado NASA’s next lunar rover will run open-source software What’s going on: NASA’s next rover mission, VIPER, is going to the moon in 2023 to prospect for water ice. But when it does, it’s going to be running a whole array of open source software—a big deal for an industry that typically works with proprietary technology.  What’s the big deal: Open-source software is available for use, modification, and distribution by anyone for any purpose. Yet it is also associated with scrappy programming for smaller projects, like hackathons or student demos. The code that fills online repositories like GitHub is often an inexpensive solution for groups running low on cash and resources needed to build code from scratch. But the space industry is surging, in no small part because there’s a demand for increased access to space. And that means the use of technologies that are less expensive and more accessible, including software. On VIPER: The rover is going to be driven around by NASA personnel operating things from Earth. Software called “ground flight control,” developed out of open source frameworks, will take data collected by VIPER to build real-time maps and renderings of the environment on the moon that the rover’s drivers can use to navigate safely. Read the full story. Big Tech’s guide to talking about AI ethics AI researchers often say good machine learning is really more art than science. The same could be said for effective public relations. Selecting the right words to strike a positive tone or reframe the conversation about AI is a delicate task: done well, it can strengthen one’s brand image, but done poorly, it can trigger an even greater backlash. The tech giants would know. Over the last few years, they’ve had to learn this art quickly as they’ve faced increasing public distrust of their actions and intensifying criticism about their AI research and technologies. Now they’ve developed a new vocabulary to use when they want to assure the public that they care deeply about developing AI responsibly—but want to make sure they don’t invite too much scrutiny. Here’s an insider’s guide to decoding their language and challenging the assumptions and values baked in. Read on.   — Karen Hao We can still have nice things A place for comfort, fun and distraction in these weird times. (Got any ideas? Drop me a line or tweet 'em at me.)   + This sanctuary in Hawaii provides a home for nearly 600 cats.   + A street in Tallinn, Estonia, has closed for two weeks to let frogs migrate safely.    + If you're lucky enough to be able to buy ramps (a wild relative of leeks and onions fleetingly in season now), here are some suggestions for how to cook them.   + Stand back and take in this epic shot of lava in Iceland.   + Leopard sharks are just giant goofballs. Sponsor Message Register for The Social Media Summit @ MIT on April 22 The Social Media Summit @ MIT (SMS@MIT) brings together the world’s leaders in social technology to examine one of the most critical and compelling issues of our time – the impact of social media on our democracies, our economies, and our public health -- with a vision to craft meaningful solutions to the social media crisis. Hosted by Sinan Aral, Director of the MIT IDE and author of The Hype Machine, and Andrew McAfee, Co-director of the MIT IDE. Register free now. The must-reads I’ve combed the internet to find you today’s most fun/important/scary/fascinating stories about technology. 1 One family illustrates the unfairness of global covid vaccine access  The outlook from Malawi, Hong Kong, and San Francisco varies significantly. (NYT $)   + The US cannot donate its vaccine surplus even if it wants to, thanks to contractual clauses signed under Trump. (Vanity Fair)   + A former UK prime minister has a plan for how we could vaccinate the world. (The Guardian)   + An idea to help prevent the next pandemic: a credit rating for viruses. (The Telegraph $)   + The scary psychological impact of getting covid post-vaccine. (New Yorker $) 2 Rapid grocery delivery services have bloomed in the pandemic And at the cost of small corner stores that used to be immune to online grocery shopping. (FT $)   + Coronavirus is revealing the gig economy’s sharp inequalities. (TR)   3 Facebook allows shady political manipulation around the world Abuses that would never be tolerated in the US are permitted in poor, small and non-western countries. (The Guardian) 4 March was record-breaking for Uber in the US The most bookings in any month in its 12-year history. (WSJ $) 5 Antitrust and privacy are on a collision course What's good for one might be terrible for the other, as recent Google and Facebook lawsuits show. (Wired $)   + Small businesses fear they'll lose sales in the fallout of a clash between Apple and Facebook. (WSJ $)   + Why it's easier to move countries than switch social media. (Wired UK) 6 Many workers aren’t ready for their offices to reopen A lot of people are spiking with anxiety and dread over the thought of desk life once again. (Slate)   + Major tech companies are making moves to reopen, though many want flexible options. (NPR)   + Google is putting limits on remote working. (CNBC)   + UK government urged to give home-workers a legal “right to disconnect.” (The Guardian) 7 Parents were struggling. Then ransomware hit their kids' schools. A once obscure form of cybercrime now preys on Americans almost daily. (NBC) 8 Is TikTok art?  There’s an argument to be made that the social media platform is generating new kinds of creative movements. (Wired $)   + Read why TikTok’s recommendation algorithms made our list of 10 Breakthrough Technologies. (TR) 9 An artist comes under fire for manipulating Khmer Rouge victims’ photos for an installation.   Photos taken in the notorious Tuol Sleng prison were colorized, and smiles added to some. (BBC) 10 Spot this robot's latest trick: peeing beer Charlotte absolutely hates everything about this, so I had no choice but to share it. (The Verge) Not an expert? Not a problem. Our team is full of those. Subscribe to MIT Technology Review today for an insightful look into technology for the future without getting bogged down by the jargon. Quote of the Day “We simply didn’t care enough to stop them. I know that I have blood on my hands by now.” —Sophie Zhang, a former Facebook employee turned whistleblower, tells The Guardian that the company turns a blind eye to vast political manipulation on its platform. Top image credit: Courtesy of the Landsman family Please send happy birthday jokes hi@technologyreview.com.   Follow me on Twitter at @n_vpatel. Thanks for reading! —Neel Was this newsletter forwarded to you, and you'd like to see more? Sign up today Leading a forever-changed workforce Join us virtually | June 8-10, 2021 Register now   Follow us: MIT Technology Review One Main Street Cambridge, MA 02142

 

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