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China confirms birth of gene-edited babies, blames scientist He Jiankui for breaking rules

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The Chinese authorities are holding scientist He Jiankui wholly responsible for creating the world’s first gene-edited babies.

He had announced their birth in November, after which the authorities announced an investigation into the matter.

A team of investigators told the official Xinhua news agency on Monday that a preliminary investigation had concluded that He had “organised a project team that included foreign staff, which intentionally avoided surveillance and used technology of uncertain safety and effectiveness to perform human embryo gene-editing activity with the purpose of reproduction, which is officially banned in the country”.

Between March 2017 and November 2018, He forged ethical review papers and recruited eight couples to participate in his experiment, resulting in two pregnancies.

Chinese scientist He Jiankui says he is proud of genetic experiments

One of the mothers gave birth to twins nicknamed “Lulu” and “Nana”, the investigators said. Another woman is still carrying a gene-edited fetus.

They also said that He, his staff and organisations related to his project would be punished according to laws and regulations.

The Guangdong government will keep the twins under medical observation.

The government decision was welcomed by the scientific community.

A biologist, who asked not to be identified, said: “This is a result I’m happy to see,” he said. ”This should be the way. There needs to be protection of the babies too.”

He said he had also researched gene-editing but all experiments were done on lab rats only.

In an interview with Beijing Youth Daily on Sunday, Shao Feng, from the Chinese Academy of Sciences and deputy director of the National Institute of Biological Sciences, said the whole incident would need to be investigated thoroughly.

“If I were to handle the matter, I would never tell [the twins] they’ve been gene-edited and allow them to live their lives like normal people,” he said. “I think that’s for the best.”

An expert in the field, Shao is worried about potential health risks the children will face as well as the incident’s effect on the human race.

China suspends all projects of gene-edited baby scientist He Jiankui, and says those involved will be punished

“Once the gate of gene-editing is wide open, the human race will be finished,” he said. “The technology is strong but the terrifying fact is that anyone slightly trained in a lab can perform it.”

He has not been seen in public since he announced the births at the Second International Summit on Human Genome Editing in Hong Kong in November. Some media reports have claimed he is being kept under house arrest or even detained by police.

A spokeswoman at the Shenzhen-based Southern University of Science and Technology, He’s employer, has previously dismissed talk of detention as rumours.

He has faced a wave of condemnation from China’s scientific community and health officials have insisted they knew nothing of his experiments.  

China’s Ministry of Science and Technology has ordered research institutes to suspend all of He’s scientific projects.

An investigation into He’s work found that the ethics review committee at the Harmonicare Women and Children’s Hospital, which the scientist said had approved his research, was not registered with the city’s health authorities.

China’s birth rate falls to its lowest rate since 1961

The hospital had earlier denied any involvement with the project.

Last month the Shenzhen authorities announced they would issue draft guidelines for the ethical review of biomedical research involving humans.

Internet users flooded social media with comments on the news of investigations into He’s work. “This professor is not worthy of being in education, he has the evil ambitions of a terrorist in disaster movies,” one wrote on Weib.

“I knew he’d end up in ruins, and this will affect the Chinese scientific community,” another wrote.

It is unclear what punishments He faces or what the consequences would be for the babies and the pregnant volunteers, if any.

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satadru
12 hours ago
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Precision gene-edited babies are officially here. The Chinese government appears to be considering them human. No word yet on whether these kids have been ruled ineligible for Olympic competition.
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A Subway to Staten Island? How a Transit Dream Died

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Deep under the New York Bay near Brooklyn, covered in mildew, seaweed and other gunk, is what thousands of commuters would consider a hidden treasure: the start of a subway tunnel linking Staten Island to the rest of New York City.

“The idea of a subway to Staten Island really goes way back,” said Stan Fischler, a subway historian. “Way, way back.”

The plan, first proposed in 1890, was approved. Maps were drawn up. Groundbreaking ceremonies were held. Construction began.

What followed were dozens of missed opportunities that could have prevented the fastest-growing borough in recent decades from becoming the most isolated.

Even today, skepticism is high that the M.T.A. will ever consider adding a Staten Island subway to its list of capital projects, especially amid the recent tug-of-war over L train repairs, in which the plan to shut the line down for 15 months was suddenly, and very questionably, scrapped.

James Oddo, the borough president, said in an email that the Staten Island subway had “no chance of happening.”

“I choose to continue focusing my attentions and energies on more realistic projects,” he added.

Building a tunnel under five miles of waterway in a crowded city is an arduous and costly endeavor, but it would offer immense relief.

About a third of the borough’s 476,000 residents take mass transit to work, most of them relying on the Staten Island Ferry for part of the trip. Of those, about 40 percent spend at least an hour commuting each way to work, a larger proportion than in any other county in the country, according to 2017 data from the United States Census Bureau.

“You would think somebody would wake up in the morning and say, ‘We could do better,’ ” said Dr. Jonathan Peters, a research fellow at the University Transportation Research Center at City College of New York. “This is not an unsolvable problem.”

For Dr. Peters, the unfinished project is more than research — it’s also personal. His great-grandmother chose to raise her family on Staten Island, relocating from the Bronx in the 1920s because she heard there would be a subway. Every day she slogged to her job in Manhattan’s garment district, telling herself a better commute was on the horizon.

“My family has been disappointed now for 97 years waiting for the subway,” he said.

To be sure, Staten Island does have a train. The mostly elevated Staten Island Railway runs along the east side of the borough, from St. George in the north to Tottenville in the south. But it is the only borough in New York City without a rail link to Manhattan.

Over more than a century, no less than seven official ideas have been floated for connections to Staten Island. One imagined a line from New Jersey. Another proposal claimed its train would zip commuters to Manhattan in a mere seven minutes. A more recent study even considered a sky tram.

None of those proposals, needless to say, have panned out.

The one idea that was approved, in 1912, would have connected Staten Island’s North Shore with Brooklyn, merging with the 4th Avenue line (now the R train) near Bay Ridge.

At the time, a major subway expansion was underway across New York City. The first underground system opened in 1904, propelling riders across Manhattan. The system stretched into the Bronx in 1905 and to Brooklyn in 1908. It would eventually expand to Queens in 1915.

The subway to Staten Island even had a name: Route 51.

“Staten Island Expects a Boom,” read a New York Times headline from 1912. “Proposed Subway Under Narrows Has Stimulating Effect on Realty.”

But the man who was one of the biggest champions of the project, Mayor John F. Hylan, was also its greatest hindrance, said Joseph Raskin, author of “The Routes Not Taken: A Trip Through New York City’s Unbuilt Subway System.”

“Very little got built or moved ahead under Hylan,” said Mr. Raskin, a retired M.T.A. employee.

“Hylan’s attitude about transit issues was definitely his downfall as mayor,” he added.

And yet Staten Island named its longest thoroughfare Hylan Boulevard, in part because “they thought they would get a rail tunnel out of him,” Mr. Raskin said.

Long before he was mayor, Hylan was a train operator in Brooklyn. He would prop up his law school books in the corner of his cab and study when he could, Mr. Raskin said. He got into a crash and was fired.

Hylan was elected mayor in 1918. A boorish man who maintained a grudge against the subway companies, he actively tried to halt funding to transit projects. Gov. Alfred E. Smith even opened an investigation into allegations that Hylan was being an obstructionist. Stories of their battles frequently occupied the front page of The Times, much like the coverage of a similar political rivalry does today.

One transportation project for the borough Hylan did support was a tunnel big enough to accommodate freight trains. The tunnel would connect New York City, by way of Staten Island, to the rest of the United States, and would be more direct than the existing routes. It was a move that he saw as revolutionary, one that could increase New York City’s potential as a commercial center and heighten his legacy for decades to come.

To sell the idea, he argued that the tunnel could serve both passenger and freight trains.

But there were critics, said Thomas Matteo, Staten Island’s borough historian. Some argued the funds should be used for subways in denser areas. Others questioned the long ride to Brooklyn and thought a train directly to Manhattan made more sense. Then there were the Staten Islanders who didn’t care for freight trains chugging through their backyards.

The borough’s population at the time was only at about 120,000, and few even commuted; many lived and worked locally.

“It was entrepreneurs and businessmen who wanted it,” Mr. Matteo said of the proposed subway. “It was never the local yokels.”

The freight factor was important — railroad companies were willing to pay for a portion of the cost to dig the tunnel if they could move freight through it. Without their support, the tunnel would be too costly.

Hylan sensed his opportunities were dwindling. He quickly ordered workers to build a tunnel that would be big enough, in his memorable phrase, to “take an elephant.”

In 1923, he hoisted a silver pick ax high above his head at groundbreaking ceremonies, where he aired his frustrations with pushback from state officials. “It takes a man of iron to deal with these people,” he said.

A number of events finally killed the plan. In 1925, the governor’s transit investigation determined it would cost $60 million instead of $20 million to build a tunnel to accommodate freight, and it recommended a passenger-only tunnel.

The Brooklyn Rapid Transit, the company that would have operated the subway, was in financial turmoil from a worker strike and from the aftermath of New York’s deadliest train disaster, which killed an estimated 100 people. On top of that, it was campaign season, and Brooklyn Rapid was denied a desperately-needed fare increase as politicians promised to make the price — a nickel — sacrosanct.

Then another more appealing idea emerged: building a bridge to connect Brooklyn and Staten Island.

In 1955, The Times said that not including train tracks on the bridge would be “one of the great planning blunders of our generation.” But that’s just what happened when the Verrazzano-Narrows Bridge opened in 1964 under the auspices of the car-centric city planner Robert Moses.

There has been limited interest in a Staten Island subway since then.

In 2013, Joseph J. Lhota, the former M.T.A. chairman, asked city planners during his mayoral campaign whether the Verrazzano Bridge could support the weight of a train; it couldn’t, they said.

Even if a subway tunnel were feasible, there is the sense that it would never get enough support from Staten Islanders, said Allen P. Cappelli, a former M.T.A. board member who was a proponent of a Staten Island subway.

“Probably a fair number of people would love it,” said Mr. Cappelli, now a member of the City Planning Commission “and probably there would be old-timers that would hate it.”

Mark Cannon, who spent years commuting for an hour to his job as an attorney in Manhattan, embodied those conflicted sentiments. He feared a subway would make Staten Island a more desirable place to live. “The commute would probably be a lot better,” he said. “But the best thing about Staten Island is it’s kind of separate from the rest of the city. It would get too crowded.”

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satadru
13 hours ago
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"He feared a subway would make Staten Island a more desirable place to live." The single biggest problem today in New York is the fear that bettering our communities will make more people want to live here.
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Opinion | The Insulin Wars

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“Doctor, could you please redo my insulin prescription? The one you gave me is wrong.” My patient’s frustration was obvious over the phone. She was standing at the pharmacy, unable to get her diabetes medication.

We had gone through this just the week before. I’d prescribed her the insulin she’d been on, at the correct dosage, but when she showed up at her pharmacy she learned that her insurance company no longer covered that brand. After a series of phone messages back and forth, I’d redone the prescription with what I’d thought was the correct insulin, but I was apparently wrong. Again.

Between 2002 and 2013, prices tripled for some insulins. Many cost around $300 a vial, without any viable generic alternative. Most patients use two or three vials a month, but others need the equivalent of four. Self-rationing has become common as patients struggle to keep up. In the short term, fluctuating blood sugar levels can lead to confusion, dehydration, coma, even death. In the long term, poorly controlled diabetes is associated with heart attacks, strokes, blindness, amputation and the need for dialysis.

The exorbitant prices confound patients and doctors alike since insulin is nearly a century old now. The pricing is all the more infuriating when one considers that the discoverers of insulin sold the patent for $1 each to ensure that the medication would be affordable. Today the three main manufacturers of insulin are facing a lawsuit accusing them of deceptive pricing schemes, but it could be years before this yields any changes.

There are several reasons that insulin is so expensive. It is a biologic drug, meaning that it’s produced in living cells, which is a difficult manufacturing process. The bigger issue, however, is that companies tweak their formulations so they can get new patents, instead of working to create cheaper generic versions. This keeps insulin firmly in brand-name territory, with prices to match.

But the real ignominy (and the meat of the lawsuit) is the dealings between the drug manufacturers and the insurance companies. Insurers use pharmacy benefit managers, called P.B.M.s, to negotiate prices with manufacturers. Insurance programs represent huge markets, so manufacturers compete to offer good deals. How to offer a good deal? Jack up the list price, and then offer the P.B.M.s a “discount.”

This pricing is, of course, hidden from most patients, except those without insurance, who have to pay full freight. Patients with insurance live with the repercussions of constantly changing coverage as P.B.M.s chase better discounts from different manufacturers.

All insurance companies periodically change which medications they cover, but insulin is in a whirlwind class by itself because of the staggering sums of money involved. “Short-acting” is supposed to be a category of insulin, but now it appears to be its category of insurance coverage. My patient’s “preferred insulin” changed three times in a year, so each time she went to the pharmacy, her prescription was rejected.

On the doctor's end, it’s an endless game of catch-up. Lantus was covered, but now it’s Basaglar: rewrite all the prescriptions for all your patients. Oops, now it’s Levemir: rewrite them all again. NovoLog was covered, then it was Humalog, but now it’s Admelog. If it’s Tuesday, it must be Tresiba.

It’s a colossal time-waster, as patients, pharmacists and doctors log hours upon hours calling, faxing, texting and emailing to keep up with whichever insulin is trending. It’s also dangerous, as patients can end up without a critical medication for days, sometimes weeks, waiting for these bureaucratic kinks to get ironed out.

Lost in this communal migraine is that this whole process is corrosive to the doctor-patient relationship. I knew that my patient wasn’t angry at me personally, but her ire came readily through the phone. No doubt this reflected desperation — she’d run out of insulin before and didn’t want to end in the emergency room on IV fluids, as she had the last time. Frankly, I was pretty peeved myself. By this point I’d already written enough insulin prescriptions on her account to fill a sixth Book of Moses. I’d already called her insurance company and gotten tangled in phone trees of biblical proportions.

This time I called her pharmacy. A sympathetic pharmacist was willing to work with me, and I stayed on the phone with her as we painstakingly submitted one insulin prescription after another. The first wasn’t covered. The second wasn’t covered. The third was. But before we could sing the requisite hosannas, the pharmacist informed me that while the insulin was indeed covered, it was not a “preferred” medication. That meant there was a $72-per-month co-payment, something that my patient would struggle to afford on her fixed income.

“So just tell me which is the preferred insulin,” I told the pharmacist briskly.

There was a pause before she replied. “There isn’t one.”

This was a new low — an insurance company now had no insulins on its top tier. Breaking the news to my patient was devastating. We had a painful conversation about how she would have to reconfigure her life in order to afford this critical medication.

It suddenly struck me that insurance companies and drug manufacturers had come upon an ingenious business plan: They could farm out their dirty work to the doctors and the patients. Let the doctors be the ones to navigate the bureaucratic hoops and then deliver the disappointing news to our patients. Let patients be the ones to figure out how to ration their medications or do without.

Congress and the Food and Drug Administration need to tame the Wild West of drug pricing. When there’s an E. coli outbreak that causes illness and death, we rightly expect our regulatory bodies to step in. The outbreak of insulin greed is no different.

It is hard to know where to direct my rage. Should I be furious at the drug manufacturers that refuse to develop generics? Should I be angry at the P.B.M.s and insurance companies that juggle prices and formularies to maximize profits, passing along huge co-payments if they don’t get a good enough deal? Should I be indignant at our elected officials who seem content to let our health care system be run by for-profit entities that will always put money before patients?

The answer is all of the above. But what’s most enraging is that drug manufacturers, P.B.M.s and insurance companies don’t have to pick up the pieces from the real-world consequences of their policies. That falls to the patients.

Danielle Ofri is a physician at Bellevue Hospital and the author of “What Patients Say, What Doctors Hear.”

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satadru
3 days ago
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Infuriating.
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Bee Collapse: The Varroa Mite Is More Destructive Than Scientists Ever Knew

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The drastic decline in global honeybee populations is no secret. The phenomenon has been named “colony collapse syndrome,” and though it’s not clear what factors led up to it, entomologist Samuel Ramsey, Ph.D., explains that the culprits have been narrowed down to a triad of contributing factors: pesticides, poor nutrition, and parasites.

Out of these factors, he says, parasites hurt honeybee populations the most. And out of all the parasites, Ramsey shows in a new PNAS paper, the ominously named Varroa destructor is the very worst.

The varroa mite, a tiny parasitic arachnid that hitches a ride on honeybees and feeds on their innards, has menaced beekeepers for a long time. But for decades, they assumed it just sipped on bee blood (hemolymph) and spread diseases. The paper written by Ramsey and his colleagues reveals the varroa mite is far more dangerous. Rather than being one part of a dangerous triad of bee threats, parasites like the varroa mite might be at the top of a hierarchy.

“I was very excited, specifically because this is something they’ve believed about these arachnids for more than half a century now, and it’s gone unquestioned for years and years and years,” Ramsey, who worked on this research as a Ph.D. candidate at the University of Maryland, College Park and is the study’s first author, tells Inverse. He is now an entomologist at the Bee Research Laboratory with the USDA’s Agricultural Research Service.

The implications of the new paper for curbing colony collapse syndrome are profound. Not only does it explain why varroa mites are so deadly, but it also explains why pesticides and poor nutrition have seemed to play such a big role in bee population decline. But perhaps most importantly, it resurfaces a long-ignored scientist’s theory about the mites that might have helped us save the bees sooner.

In the paper, Ramsey and his colleagues show that the varroa mite doesn’t just suck blood but feeds on a vital organ in the honeybee called the fat body, which stores nutrients and filters toxins — sort of like a human’s liver. “It’s less like having a mosquito land on you and drain out your blood, and more like having a mosquito land on you, liquefy your liver, suck that out, and fly away,” Ramsey says.

This brutal observation underlies the effects of the triad of bee killers. “Now we understand why the pesticides the bees have been exposed to for decades are killing them,” Ramsey says. The same thing goes for nutrition, since not only is the fat body a toxin-filtering organ, it’s also a nutrient storage organ: “They’re not able to store nutrients when the tissue is constantly being decimated by these mites,” he adds.

This revelation is a major one for beekeepers and entomologists, who have been laboring for decades to figure out how to deal with varroa mites.

“I genuinely hope this research will be used to create new methods for reducing mite levels,” says Ramsey. A major obstacle to developing effective defenses against the mites has been this fundamental misunderstanding of how they feed.

But the problem might have been solved much sooner had entomologists paid attention to the work of North Carolina State University entomology researcher Allen Cohen, Ph.D., whose work has gone mostly unnoticed, until now.

“Someone had published a paper somewhere along the line that varroa mites feed on the hemolymph of bees, and it just stuck there without verification,” Cohen tells Inverse.

As Ramsey and his team outline in PNAS, the assumption that varroa mites feed on bees’ blood comes from three papers from the late 1970s, all written in the Soviet Union. American scientists had worked with mediocre English translations of these papers for years, and the scientific community had cited them over and over, but none of these studies actually offered solid evidence that the mites were drinking bee blood.

Ramsey refers to this issue as “chain citation.” Scientists cite a source, then someone else cites the second source that cited the first source, and so on until eventually the origin of a piece of information (or misinformation) is irrelevant because it’s just all over the scientific literature.

“Since people were often citing a citation of a citation, people never looked at the details of the study,” he says.

Cohen, however, had questioned this assumption from the start. In a litany of research papers, he and his longtime collaborator Eric Erickson, Ph.D., laid out the evidence that varroa mites and other parasites must be eating something more nutritious than insect blood — a notoriously nutrient-poor substance — most likely by injecting digestive juices to dissolve tissue then sucking it back up. In the video below, recorded in 2006 or 2007, he explains this idea. “We’ve long known spiders feed that way,” he says. “For mites, that just wasn’t known.”

Cohen — and the bees — have been unfortunate victims of chain citation, but Ramsey’s paper redeems his nearly 40 years of research on parasitic and predatory insects and arachnids. When Ramsey and his then-Ph.D. adviser Dennis VanEngelsdorp, Ph.D., realized their work lined up with what Cohen had been saying all along, they contacted him to discuss their new work. Cohen was thrilled.

“He was really happy I could take it up and move some of this dogma out of the way,” recalls Ramsey. Cohen, who was pleased to finally have his idea publicly confirmed, eventually ended up as a co-author on the paper. He expressed his admiration and gratitude that they’d brought him in on the project.

“Samuel Ramsey is a class act. A lot of people will get ideas started from somewhere else, then cover it up, and make it look like they invented the wheel,” Cohen says. “He has been very honest and gracious about sharing responsibility, so I really do appreciate that.”

With this hypothesis confirmed once and for all, in a major scientific journal, Ramsey says he hopes scientists can use the information to come up with better systemic insecticides — a chemical that won’t harm the bee but will kill a mite who bites the bee, sort of like a dog’s flea pill.

Ramsey’s next steps will be to investigate another genus of bee parasites called the Tropilaelaps mite, which has recently expanded beyond its original range of Korea and China and been found in the Middle East. He and his colleagues hope that by studying this mite, US beekeepers and entomologists won’t be caught off-guard like they were with Varroa destructor.

“I’m trying to make sure that the fundamentals of this organism’s biology are accessible for us as researchers before it gets to the US,” he says. “Part of my work now is to make sure we don’t end up in the same situation that we did with varroa.”

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satadru
3 days ago
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wow
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freeAgent
2 days ago
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fxer
2 days ago
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“It’s less like having a mosquito land on you and drain out your blood, and more like having a mosquito land on you, liquefy your liver, suck that out, and fly away,” Ramsey says.”
Bend, Oregon

To fight climate misinformation, point to the man behind the curtain

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In 2018, Gallup’s annual environment survey found that overall concern about climate change in the US was roughly stable. But within that stability was a growing divide. The 87 percent of Democrats who reported in 2017 that they believe global warming is a result of human activity bumped up slightly to 89 percent in 2018. Meanwhile, for Republicans, that number dipped from 40 percent in 2017 to 35 percent in 2018.

How can the misinformation campaign driving this divide be fought? Just reporting and reiterating the facts of anthropogenic climate change doesn’t seem to work. A paper in Nature Climate Change this week argues that attempts to counter misinformation need to draw on the research that is illuminating the bad actors behind climate denialism, the money funding them, and how their coordinated campaigns are disrupting the political process.

Facts alone won’t cut it

“It is not enough simply to communicate to the public over and again the scientific consensus on human-caused climate change,” write Justin Farrell, Kathryn McConnell, and Robert Brulle in their paper, because “individuals’ preexisting ideologies and values systems can play a significant role in whether they accept or reject scientific consensus.”

Something called “attitudinal inoculation” does show some promise as a strategy—essentially informing people of the facts while also providing a warning of the existence of misinformation campaigns and the arguments and strategies they might use. This “vaccine” strategy can create resistance by using a small dose of the virus, and it seems to work across the political spectrum.

On its own, attitudinal inoculation doesn’t tackle the real source of the misinformation: the intentional and often coordinated campaigns of organizations such as think tanks, lobby groups, public relations firms, and others that aim to obfuscate and sow doubt. Attitudinal inoculation could possibly be improved by “drawing more explicit attention to who is behind these messages,” write Farrell and his colleagues.

And, they add, inoculation only succeeds “when the patient is not already sick.” In the case of the refusal to accept evidence about climate change, which is already widespread, they argue that political and legal strategies need to join the fight, too. For instance, research that uncovers the sources of climate misinformation can inform legal battles, which in turn can play a role in swaying public opinion. The discovery that ExxonMobil internally acknowledged climate change while externally spreading denial is one example of the crucial role this kind of research can play.

Getting political

Investigative work can also draw attention to manipulation of the political process, as in astroturfing strategies like the hired actors paid to create the impression of local support for a new power plant in New Orleans. Other possible political strategies include campaigns for divesting from fossil fuels and targeting campaigns at the areas that are high in both opposition to climate science and vulnerability to the effects of climate change (like Florida and Alaska).

Improved laws governing financial transparency, particularly for political campaigns, would be invaluable, write Farrell and his colleagues: “Had better transparency legislation been in place 30 years ago… hundreds of millions of dollars would not have been so easily, and so furtively, channelled.”

They point to the $2 billion spent on climate lobbying from 2000 to 2016, which dwarfed the spending of environmental organizations and renewable energy corporations “by a factor of 10:1.” Without that kind of legislation, and without it being anywhere on the horizon, ongoing research on funding flows is essential.

Any one of these strategies isn’t enough on its own, they argue—the research on funding flows needs to inform legal and political efforts and contribute to the power of attitudinal inoculation. Rebutting the misinformation is part of the strategy, they write—but we “must also confront the institutional and political architectures that make the spread of misinformation possible in the first place.”

Nature Climate Change, 2018. DOI: 10.1038/s41558-018-0368-6  (About DOIs).

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Sen. Marco Rubio wants to ban states from protecting consumer privacy

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Getty Images | Zach Gibson

US Sen. Marco Rubio (R-Fla.) has proposed a federal privacy law that would preempt tougher privacy rules issued by states.

Rubio's announcement Wednesday said that his American Data Dissemination (ADD) Act "provides overdue transparency and accountability from the tech industry while ensuring that small businesses and startups are still able to innovate and compete in the digital marketplace."

But Rubio's bill establishes a process for creating rules instead of issuing specific rules right away, and it allows up to 27 months for Congress or the Federal Trade Commission to write the actual rules.

In addition, the bill text says it "shall supersede" any provision of a state law that pertains to the same consumer data governed by Rubio's proposed federal law. That includes names, Social Security numbers, other government ID numbers, financial transactions, medical histories, criminal histories, employment histories, user-generated content, "unique biometric data, such as fingerprint, voice print, retina or iris image, or other unique physical representation," and other personal data collected by companies.

California last year imposed a privacy law that gives consumers more control over how their personal data is collected, used, and sold by corporations.

"We oppose any attempt to preempt California's privacy laws," Sarah Lovenheim, communications advisor to California Attorney General Xavier Becerra, wrote on Twitter yesterday.

Rubio’s bill based on 45-year-old law

Rubio's bill wouldn't do much to protect Americans' data privacy, consumer advocacy group Public Knowledge said. The Rubio bill uses the Privacy Act of 1974 as its framework; the 1974 law applies to federal agencies, but Rubio's bill would apply similar rules to the private sector.

"The 1974 Privacy Act is fundamentally a transparency and data accuracy law, designed well before the popularization of the Internet and cloud computing," and not suited to today's "constant stream of data breaches and scandals," Public Knowledge Global Policy Director Gus Rossi said.

"It's absurd that the bill would preempt state law and constrain the jurisdiction of specialized agencies like the FCC in exchange for very limited protections for consumers," Rossi also said.

DOJ says 1974 law difficult to enforce

The Privacy Act of 1974 generally prohibits disclosure of data about an individual without that individual's consent, but it contains various exceptions, and the Department of Justice says the law is difficult to interpret and enforce.

The Act "can generally be characterized as an omnibus 'code of fair information practices' that attempts to regulate the collection, maintenance, use, and dissemination of personal information by federal executive branch agencies," the DOJ says in an overview last updated in 2015. "However, the Act's imprecise language, limited legislative history, and somewhat outdated regulatory guidelines have rendered it a difficult statute to decipher and apply."

Despite the DOJ saying the law is confusing, Rubio argued in an op-ed for The Hill that the Privacy Act of 1974 is "widely considered one of the seminal pieces of privacy law in effect today."

"Any national privacy law must provide clear, consistent protections that both consumers and companies can understand, and the FTC can enforce. That is why my bill leans heavily on the Privacy Act framework," Rubio wrote.

Rubio's bill would have the FTC establish a process in which individuals can contact companies to request access to their personal data. Companies would have to either provide the data to consumers or delete the data. If a company lets an individual view the data, the company would have to correct any mistakes if the person demonstrates that the records are "not accurate, relevant, timely, or complete." Companies would only have to delete the data if they choose not to provide it to consumers upon consumers' requests.

Upon requests from individuals, companies would also have to tell individuals about instances in which their records have been disclosed to other parties. The FTC would be responsible for enforcing the new rules under its authority to police unfair and deceptive acts or practices.

Rubio wrote that cumbersome regulations might "entrench large, incumbent corporations."

"Facebook, Apple, Amazon, Netflix, Google (FAANG) and others would welcome cumbersome regulations that prevent start-ups and smaller competitors from challenging the FAANG's current dominance," he wrote.

Rubio's bill instructs the FTC to "establish criteria for exempting certain small, newly formed covered providers from the requirements."

Rubio justified his proposed preemption of state laws by writing that "a state-by-state patchwork of laws is simply not an effective means of dealing with an issue of this magnitude" and that "Internet data is unquestionably interstate commerce, and it is the responsibility of Congress to take appropriate action."

Bill delays final rules for up to 27 months

Rubio's bill would not impose privacy protections immediately upon passage. It would give the Federal Trade Commission six months to submit "detailed recommendations for privacy requirements" to Congress. Congress would have up to two years after the bill's passage to issue actual privacy requirements. During that time, the FTC would not be able to issue final rules on its own.

If Congress fails to act within two years, the FTC would be authorized to act on its own and would be required to issue final regulations "not later than 27 months after" the bill is enacted.

Congressional Democrats recently proposed a much stricter privacy law, which could issue steep fines to companies and send their top executives to prison for up to 20 years if they violate Americans' privacy.

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satadru
3 days ago
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I don't understand the point of Rubio pushing a DOA bill which makes him look like even more of a sell-out.
New York, NY
acdha
3 days ago
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I’m starting to question whether his belief in states rights is genuine…
Washington, DC
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