Max was only a toddler when his parents noticed there was “something different” about the way he moved. He was slower than other kids his age, and he struggled to jump. He couldn’t run.
Blood tests suggested he might have a genetic disease— one that affected a key muscle protein. Max’s dad, Tao Wang, a researcher for a climate philanthropy organization, says he and his wife were initially in denial. It took them a few months to take Max for the genetic test that confirmed their fears: he had Duchenne muscular dystrophy.
Duchenne is a rare disease that tends to affect young boys. It’s progressive—those affected generally lose muscle function as they get older. There is no cure. Many people with the disorder require wheelchairs by the time they reach their 20s. Most do not survive beyond their 30s.
Max’s diagnosis hit Wang and his wife “like a tornado,” he says. But eventually one of his doctors mentioned a clinical trial that he was eligible for. The trial was for an experimental gene therapy designed to replace the missing muscle protein with a shortened, engineered version that might help slow his decline or even reverse it. Enrolling Max in the trial was a no-brainer for Wang. “We were willing to try anything that could change the course [of the disease] and give us some hope,” he says.
That was more than two years ago. Today, Max is an active eight-year-old, says Wang. He runs, jumps, climbs stairs without difficulty, and even enjoys hiking. “He’s a totally different kid,” says Wang.
The gene therapy he received was recently considered for accelerated approval by the US Food and Drug Administration. Such approvals, reserved for therapies targeting serious conditions that lack existing treatments, require less clinical trial data than standard approvals.
While the process can work well, it doesn’t always. And in this case, the data is not particularly compelling. The drug failed a randomized clinical trial—it was found to be no better than a placebo.
Still, many affected by Duchenne are clamoring for access to the treatment. At an FDA advisory committee meeting in May set up to evaluate its merits, multiple parents of children with Duchenne pleaded with the organization to approve the drug immediately—months before the results of another clinical trial were due. On June 22, the FDA granted conditional approval for the drug for four- and five-year-old boys.
This drug isn’t the only one to have been approved on weak evidence. There has been a trend toward lowering the bar for new medicines, and it is becoming easier for people to access treatments that might not help them—and could harm them. Anecdotes appear to be overpowering evidence in decisions on drug approval. As a result, we’re ending up with some drugs that don’t work.
We urgently need to question how these decisions are made. Who should have access to experimental therapies? And who should get to decide? Such questions are especially pressing considering how quickly biotechnology is advancing. Recent years have seen an explosion in what scientists call “ultra-novel” therapies, many of which involve gene editing. We’re not just improving on existing classes of treatments—we’re creating entirely new ones. Managing access to them will be tricky.
Just last year, a woman received a CRISPR treatment designed to lower her levels of cholesterol—a therapy that directly edited her genetic code. Also last year, a genetically modified pig’s heart was transplanted into a man with severe heart disease. Debates have raged over whether he was the right candidate for the surgery, since he ultimately died.
For many, especially those with severe diseases, trying an experimental treatment may be better than nothing. That’s the case for some people with Duchenne, says Hawken Miller, a 26-year-old with the condition. “It’s a fatal disease,” he says. “Some people would rather do something than sit around and wait for it to take their lives.”
There’s a difficult balance to be reached between protecting people from the unknown effects of a new treatment and enabling access to something potentially life-saving. Trying an experimental drug could cure a person’s disease. It could also end up making no difference, or even doing harm. And if companies struggle to get funding following a bad outcome, it could delay progress in an entire research field—perhaps slowing future drug approvals.
In the US, most experimental treatments are accessed through the FDA. Starting in the 1960s and ’70s, drug manufacturers had to prove to the agency that their products actually worked, and that the benefits of taking them would outweigh any risks. “That really closed the door on patients’ being able to access drugs on a speculative basis,” says Christopher Robertson, a specialist in health law at Boston University
By: Jessica Hamzelou
Title: Who gets to decide who receives experimental medical treatments?
Sourced From: www.technologyreview.com/2023/08/10/1077216/experimental-treatments/
Published Date: Thu, 10 Aug 2023 09:00:00 +0000
Did you miss our previous article…
Finding value in generative AI for financial services
With tools such as ChatGPT, DALLE-2, and CodeStarter, generative AI has captured the public imagination in 2023. Unlike past technologies that have come and gone—think metaverse—this latest one looks set to stay. OpenAI’s chatbot, ChatGPT, is perhaps the best-known generative AI tool. It reached 100 million monthly active users in just two months after launch, surpassing even TikTok and Instagram in adoption speed, becoming the fastest-growing consumer application in history.
According to a McKinsey report, generative AI could add $2.6 trillion to $4.4 trillion annually in value to the global economy. The banking industry was highlighted as among sectors that could see the biggest impact (as a percentage of their revenues) from generative AI. The technology “could deliver value equal to an additional $200 billion to $340 billion annually if the use cases were fully implemented,” says the report.
For businesses from every sector, the current challenge is to separate the hype that accompanies any new technology from the real and lasting value it may bring. This is a pressing issue for firms in financial services. The industry’s already extensive—and growing—use of digital tools makes it particularly likely to be affected by technology advances. This MIT Technology Review Insights report examines the early impact of generative AI within the financial sector, where it is starting to be applied, and the barriers that need to be overcome in the long run for its successful deployment.
DOWNLOAD THE REPORT
The main findings of this report are as follows:
Corporate deployment of generative AI in financial services is still largely nascent. The most active use cases revolve around cutting costs by freeing employees from low-value, repetitive work. Companies have begun deploying generative AI tools to automate time-consuming, tedious jobs, which previously required humans to assess unstructured information.
There is extensive experimentation on potentially more disruptive tools, but signs of commercial deployment remain rare. Academics and banks are examining how generative AI could help in impactful areas including asset selection, improved simulations, and better understanding of asset correlation and tail risk—the probability that the asset performs far below or far above its average past performance. So far, however, a range of practical and regulatory challenges are impeding their commercial use.Legacy technology and talent shortages may slow adoption of generative AI tools, but only temporarily. Many financial services companies, especially large banks and insurers, still have substantial, aging information technology and data structures, potentially unfit for the use of modern applications. In recent years, however, the problem has eased with widespread digitalization and may continue to do so. As is the case with any new technology, talent with expertise specifically in generative AI is in short supply across the economy. For now, financial services companies appear to be training staff rather than bidding to recruit from a sparse specialist pool. That said, the difficulty in finding AI talent is already starting to ebb, a process that would mirror those seen with the rise of cloud and other new technologies.
More difficult to overcome may be weaknesses in the technology
By: MIT Technology Review Insights
Title: Finding value in generative AI for financial services
Sourced From: www.technologyreview.com/2023/11/26/1083841/finding-value-in-generative-ai-for-financial-services/
Published Date: Mon, 27 Nov 2023 01:00:00 +0000
The Download: unpacking OpenAI Q* hype, and X’s financial woes
This is today’s edition of The Download our weekday newsletter that provides a daily dose of what’s going on in the world of technology.
Unpacking the hype around OpenAI’s rumored new Q* model
Ever since last week’s dramatic events at OpenAI, the rumor mill has been in overdrive about why the company’s board tried to oust CEO Sam Altman.
While we still don’t know all the details, there have been reports that researchers at OpenAI had made a “breakthrough” in AI that alarmed staff members. The claim is that they came up with a new way to make powerful AI systems and had created a new model, called Q* (pronounced Q star), that was able to perform grade-school level math.
Some at OpenAI reportedly believe this could be a breakthrough in the company’s quest to build artificial general intelligence, a much-hyped concept of an AI system that is smarter than humans.
So what’s actually going on? And why is grade-school math such a big deal? Our senior AI reporter Melissa Heikkilä called some experts to find out how big of a deal any such breakthrough would really be. Here’s what they had to say.
This story is from The Algorithm, our weekly newsletter giving you the inside track on all things AI. Sign up to receive it in your inbox every Monday.
I’ve combed the internet to find you today’s most fun/important/scary/fascinating stories about technology.
1 X is hemorrhaging millions in advertising revenue
Internal documents show the company is in an even worse position than previously thought. (NYT $)
Misinformation ‘super-spreaders’ on X are reportedly eligible for payouts from its ad revenue sharing program. (The Verge)
It’s not just you: tech billionaires really are becoming more unbearable. (The Guardian)
2 The brakes seem to now be off on AI development
With Sam Altman’s return to OpenAI, the ‘accelerationists’ have come out on top. (WSJ $)
Inside the mind of OpenAI’s chief scientist, Ilya Sutskever. (MIT Technology Review)
3 How Norway got heat pumps into two-thirds of its households
Mostly by making it the cheaper choice for people. (The Guardian)
Everything you need to know about the wild world of heat pumps. (MIT Technology Review)
4 How your social media feeds shape how you see the Israel-Gaza war
Masses of content are being pumped out, rarely with any nuance or historical understanding. (BBC)
China tried to keep kids off social media. Now the elderly are hooked. (Wired $)
5 US regulators have surprisingly little scope to enforce Amazon’s safety rules
As demonstrated by the measly $7,000 fine issued by Indiana after a worker was killed by warehouse machinery. (WP $)
6 How Ukraine is using advanced technologies on the battlefield
The Pentagon is using the conflict as a testbed for some of the 800-odd AI-based projects it has in progress. (AP $)
Why business is booming for military AI startups. (MIT Technology Review)
7 Shein is trying to overhaul its image, with limited success
Its products seem too cheap to be ethically sourced—and it doesn’t take kindly to people pointing that out. (The Verge)
Why my bittersweet relationship with Shein had to end. (MIT Technology Review)
8 Every app can be a dating app now
As people turn their backs on the traditional apps, they’re finding love in places like Yelp, Duolingo and Strava. (WSJ $)
+ Job sharing apps are also becoming more popular. (BBC)
9 People can’t get enough of work livestreams on TikTok
It’s mostly about the weirdly hypnotic quality of watching people doing tasks like manicures or frying eggs. (The Atlantic $)
10 A handy guide to time travel in the movies
Whether you prioritize scientific accuracy or entertainment value, this chart has got you covered. (Ars Technica)
Quote of the day
“It’s in the AI industry’s interest to make people think that only the big players can do this—but it’s not true.”
—Ed Newton-Rex, who just resigned as VP of audio at Stability.AI, says the idea that generative AI models can only be built by scraping artists’ work is a myth in an interview with The Next Web.
The big story
The YouTube baker fighting back against deadly “craft hacks”
STEPHANIE ARNETT/MITTR | ENVATO, GETTY
Ann Reardon is probably the last person you’d
By: Charlotte Jee
Title: The Download: unpacking OpenAI Q* hype, and X’s financial woes
Sourced From: www.technologyreview.com/2023/11/27/1083894/the-download-openai-q-hype-x-financial-woes/
Published Date: Mon, 27 Nov 2023 13:11:00 +0000
The Download: OpenAI’s wild year, and tech’s cult of personality
Inside OpenAI’s wild year
Few companies can say they’ve had more of a rollercoaster year than OpenAI. At the beginning of 2023, the world’s hottest AI startup was riding high on the success of its ChatGPT chatbot. Now, it’s dusting itself off from an attempted coup which saw Sam Altman ousted and reinstated as the company’s CEO within a few short days.
Our AI experts have been following OpenAI’s every move throughout the year, often with exclusive access to the people building the revolutionary products and systems. Check out just some of the highlights from the past year—and what we think is coming next.
+ ChatGPT is everywhere. Here’s where it came from. While ChatGPT may have looked like an overnight sensation, it was actually built on decades of research.
+ Back in April, our senior AI editor Will Douglas Heaven had exclusive conversations with four OpenAI insiders to learn more about how they built the viral chatbot.
+ One of the year’s hottest topics was how ChatGPT was already changing education—from cutting corners for science homework, to writing entire theses. But some teachers believe that generative AI could actually make learning better. (Bonus: check out high school senior Rohan Mehta’s robust defense of ChatGPT in the classroom)
+ OpenAI’s hunger for data is coming back to bite it. The company’s AI services may be breaking data protection laws, and there is no resolution in sight. Read the full story.
+ Ilya Sutskever, OpenAI’s chief scientist, was one of the key executives to turn against and try to overthrow CEO Sam Altman in the recent OpenAI revolt. When Will Douglas Heaven met him earlier this year, Sutskever told him about his new priority—figuring out how to stop an artificial superintelligence from going rogue. Read the full story.
+ What’s next for OpenAI. Read our timeline of how the recent drama unfolded, and what it means for the AI industry at large. Read the full story.
1 X and OpenAI are cults of personality
While both companies claim to be reshaping the world, they each really answer to one man. (WP $)
We shouldn’t miss the chance to hold OpenAI accountable. (FT $)
Wall Street still sees an opportunity to make money, though. (Motherboard)
AI is a real capitalist’s game these days. (NYT $)
2 Pro-China foreign influencers are Beijing’s latest propaganda tool
Vloggers based in the US are doing the Chinese government’s job for them. (FT $)
China’s young workers are embracing the digital nomad dream. (Reuters)
3 No, AI isn’t human
It’s important to keep reminding ourselves that no matter how convincingly its systems mimic us, they aren’t rational beings. (Vox)
We’re living in the age of uncensored AI. (The Atlantic $)
AI just beat a human test for creativity. What does that even mean? (MIT Technology Review)
4 Australia doesn’t exist
That’s according to Microsoft’s Bing search results, fueled by conspiracy theories. (The Guardian)
5 India’s powerful influencers could sway its elections
Marketing firms are racing to hire the social media personalities with the biggest followings. (Wired $)
6 Keep an eye on these retail bots this Black Friday
Some are a lot more helpful than others. (WSJ $)
7 Crypto pig butchering schemes are a billion-dollar industry
But we still know next to nothing about the criminals orchestrating them. (Reuters)
Crypto’s biggest beasts are falling, one by one. (NY Mag $)
The involuntary criminals behind pig-butchering scams. (MIT Technology Review)
8 Social media these days is seriously depressing
Negative news doesn’t just affect us—it changes society, too. (Wired $)
It’s not just you—Zoom meetings really are exhausting. (IEEE Spectrum)
How to log off. (MIT Technology Review)
9 Your messy bedroom’s days are numbered
This laundry-grasping robot is ready to pick up the slack—and stinky socks. (New Scientist $)
10 It’s time to read Napoleon’s sprawling Wikipedia page
Because Ridley Scott, his latest biographer, certainly won’t have. (Slate $)
The new biopic is a surprising lol-fest. (The Atlantic $)
Quote of the day
“When Sam didn’t have a home, Microsoft gave him one without hesitation — and when the whole company didn’t have a home, Microsoft gave them one.”
—Barry Briggs, a former Microsoft executive, tells the Financial Times how Satya Nadella’s savvy handling of the OpenAI drama is likely to further cement the relationship between the two companies.
The big story
California’s coming offshore wind boom faces big engineering hurdles
By: Rhiannon Williams
Title: The Download: OpenAI’s wild year, and tech’s cult of personality
Sourced From: www.technologyreview.com/2023/11/24/1083869/the-download-openais-wild-year-and-techs-cult-of-personality/
Published Date: Fri, 24 Nov 2023 13:10:00 +0000
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