jm + diseases   3

A Controversial Virus Study Shows Flaws in How Science Is Done - The Atlantic
Absent clearer guidelines, the burden falls on the scientific enterprise to self-regulate—and it isn’t set up to do that well. Academia is intensely competitive, and “the drivers are about getting grants and publications, and not necessarily about being responsible citizens,” says Filippa Lentzos from King’s College London, who studies biological threats. This means that scientists often keep their work to themselves for fear of getting scooped by their peers. Their plans only become widely known once they’ve already been enacted, and the results are ready to be presented or published. This lack of transparency creates an environment where people can almost unilaterally make decisions that could affect the entire world.

Take the horsepox study [the main topic of this article]. Evans was a member of a World Health Organization committee that oversees smallpox research, but he only told his colleagues about the experiment after it was completed. He sought approval from biosafety officers at his university, and had discussions with Canadian federal agencies, but it’s unclear if they had enough ethical expertise to fully appreciate the significance of the experiment. “It’s hard not to feel like he opted for agencies that would follow the letter of the law without necessarily understanding what they were approving,” says Kelly Hills, a bioethicist at Rogue Bioethics.

She also sees a sense of impulsive recklessness in the interviews that Evans gave earlier this year. Science reported that he did the experiment “in part to end the debate about whether recreating a poxvirus was feasible.” And he told NPR that “someone had to bite the bullet and do this.” To Hills, that sounds like I did it because I could do it. “We don’t accept those arguments from anyone above age 6,” she says.
the-atlantic  science  news  smallpox  horsepox  diseases  danger  risk  academia  papers  publish-or-perish  bioethics  ethics  biology  genetics 
9 weeks ago by jm
Is America Ready for a Global Pandemic? - The Atlantic
The egg-based [vaccine manufacture] system depends on chickens, which are themselves vulnerable to flu. And since viruses can mutate within the eggs, the resulting vaccines don’t always match the strains that are circulating. But vaccine makers have few incentives to use anything else. Switching to a different process would cost billions, and why bother? Flu vaccines are low-margin products, which only about 45 percent of Americans get in a normal year. So when demand soars during a pandemic, the supply is not set to cope.

American hospitals, which often operate unnervingly close to full capacity, likewise struggled with the surge of patients. Pediatric units were hit especially hard by H1N1, and staff became exhausted from continuously caring for sick children. Hospitals almost ran out of the life-support units that sustain people whose lungs and hearts start to fail. The health-care system didn’t break, but it came too close for comfort—especially for what turned out to be a training-wheels pandemic. The 2009 H1N1 strain killed merely 0.03 percent of those it infected; by contrast, the 1918 strain had killed 1 to 3 percent, and the H7N9 strain currently circulating in China has a fatality rate of 40 percent.

That the U.S. could be so ill-prepared for flu, of all things, should be deeply concerning. The country has a dedicated surveillance web, antiviral drugs, and an infrastructure for making and deploying flu vaccines. None of that exists for the majority of other emerging infectious diseases.
vaccines  health  diseases  h1n1  flu  pandemics  future  scary 
june 2018 by jm
Of Course 23andMe's Plan Has Been to Sell Your Genetic Data All Along
Today, 23andMe announced what Forbes reports is only the first of ten deals with big biotech companies: Genentech will pay up to $60 million for access to 23andMe's data to study Parkinson's. You think 23andMe was about selling fun DNA spit tests for $99 a pop? Nope, it's been about selling your data all along.

testing  ethics  dna  genentech  23andme  parkinsons  diseases  health  privacy 
january 2015 by jm

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