China asserts firm grip on research data; Science, April 9, 2018

Dennis Normile, Science; China asserts firm grip on research data

"In a move few scientists anticipated, the Chinese government has decreed that all scientific data generated in China must be submitted to government-sanctioned data centers before appearing in publications. At the same time, the regulations, posted last week, call for open access and data sharing...

...[T]he U.S. National Science Foundation (NSF) is concerned. “NSF bases its funding and its international collaboration on the principle of the freedom for scientists to publish all of the data they generate with U.S. funding, regardless of where the data are collected,” Nancy Sung, head of NSF’s Beijing office, wrote in an email to Science. “We would be concerned about any potential impact to this principle.”"

Peer-review activists push psychology journals towards open data; Nature, March 1, 2017

Gautam Naik, Nature; 

Peer-review activists push psychology journals towards open data

"An editor on the board of a journal published by the prestigious American Psychological Association (APA) has been asked to resign in a controversy over data sharing in peer review.

Gert Storms — who says he won’t step down — is one of a few hundred scientists who have vowed that, from the start of this year, they will begin rejecting papers if authors won’t publicly share the underlying data, or explain why they can’t.

The idea, called the Peer Reviewers’ Openness Initiative, was launched by psychologists hoping to increase transparency in a field beset by reports of fraud and dubious research practices. And the APA, which does not ask that data be made available to peer reviewers or shared openly online, seems set to become an early testing ground for the initiative’s influence. With Storms’ situation still unresolved, the society’s council of editors will discuss whether it should change its policies at a meeting in late March."

There’s No Such Thing as Innocuous Personal Data; Slate, 8/8/16

Elizabeth Weingarten, Slate; There’s No Such Thing as Innocuous Personal Data:

"The way you walk can be as unique as your fingerprint; a couple of studies show that gait can help verify the identity of smartphone users. And gait can also predict whether someone is at risk for dementia. Seemingly useless pieces of data may let experts deduce or predict certain behaviors or conditions now, but the big insights will come in the next few years, when companies and consumers are able to view a tapestry of different individual data points and contrast them with data across the entire population. That’s when, according to a recent report from Berkeley’s Center for Long-Term Cybersecurity, we’ll be able to “gain deep insight into human emotional experiences.”

But it’s the data that you’re creating now that will fuel those insights. Far from meaningless, it’s the foundation of what you (and everyone else) may be able to learn about your future self."

Zika Data From the Lab, and Right to the Web; New York Times, 7/18/16

Donald G. McNeil Jr., New York Times; Zika Data From the Lab, and Right to the Web:

"Dr. O’Connor’s decision was the most radical manifestation of a trend already underway. In early February, more than 30 of the most prominent academic journals, research institutions and research funders signed a “Statement on Data Sharing in Public Health Emergencies” in which the journals agreed to make all articles about the Zika virus available free instead of charging their subscription fees, which can be hundreds of dollars.

The journals also agreed to consider articles that had first been posted for comment on public forums like bioRxiv, which is hosted by the Cold Spring Harbor Laboratory on Long Island. The funders agreed to make everyone receiving their money share data as widely as possible...

“I never planned to be an evangelist,” he said. “I was happy toiling in anonymity, so this is a surreal experience. We all grew up in the same system: You do a study, you submit it to a journal, and your place in the hierarchy depends on the quality of the journal it appears in.”

“If it’s all you’ve known, you assume it’s the right way. But if you’ve got data that can contribute to the public health response during an epidemic — is it really yours to hang onto?”"

Open Data Platform Lets Aid Groups Respond More Efficiently To Crises; Huffington Post, 5/27/16

Eleanor Goldberg, Huffington Post; Open Data Platform Lets Aid Groups Respond More Efficiently To Crises:

"When a humanitarian crisis hits, there’s an inevitable mad scramble to collect data, which is often scattered, limited and fail to offer a “big picture” of the situation at hand.

Nearly two years after the launch of the Humanitarian Data Exchange, however, governments, nonprofits, aid workers and the general public can now share information from the ground and upload it to one platform so that it’s stored, and accessible, in a single location.

The goal is to be able to offer up humanitarian aid in an efficient and faster way.

The project, which is managed by the U.N.’s Office for the Coordination of Human Affairs, now covers about 250 locations across the world. Those include Ecuador and Kenya’s Kakuma refugee camp, according to Reuters."

Biden calls for open-data research; Politico, 5/10/16

David Pittman, Politico; Biden calls for open-data research:

"BIDEN GETS TOUGH AT HEALTH DATAPALOOZA:

Vice President Joe Biden issued some of his strongest words yet in support of sharing clinical and research data, in remarks to data scientists Monday at Health Datapalooza. He said science was at an inflection point, with the ease of genomic sequencing, massive increases in computing power and digitization of health records. “You told me that this is the way we can make great progress, by sharing more data, breaking down the silos,” Biden told a standing-room only crowd in the ballroom of the Grand Hyatt. “Imagine what we could, you could do to help in the fight against cancer if you had access to millions of cancer pathologies, genomic sequences, family histories and treatment outcomes.”

Calls for a national research database:

The country needs a way to share and make public underlying data from medical research, Biden said, a one point criticizing the New Journal of Medicine editor for saying such policy would breed “data parasites.”

Flying records cross country:

The Biden family had to literally fly Beau’s medical records to Houston’s MD Anderson Cancer Center because EHR systems couldn’t talk to each out. And this was the vice president’s son. “We spent $35 billion to avoid that kind of thing from happening.”"

Making the Most of Clinical Trial Data; New York Times, 4/12/16

Editorial Board, New York Times; Making the Most of Clinical Trial Data:

"Some researchers may oppose sharing data they have worked hard to gather, or worry that others will analyze it incorrectly. Creating opportunities for collaboration on subsequent analysis may help alleviate these concerns.

Of course, any data sharing must take patients’ privacy into account; patients must be informed before joining a clinical trial that their data may be shared and researchers must ensure that the data cannot be used to identify individuals.

By making data available and supporting analysis, foundations, research institutions and drug companies can increase the benefit of clinical trials and pave the way for new findings that could help patients."

GSK Eases IP Rights For Poorest Countries, Considers Patent Pooling For Cancer; Intellectual Property Watch, 3/31/16

Catherine Saez, Intellectual Property Watch; GSK Eases IP Rights For Poorest Countries, Considers Patent Pooling For Cancer:

"The global medicines manufacturer said it wishes to widen access to its innovative new medicines around the world. The company, which already set tiered pricing, data-sharing, and “innovative partnerships,” said it recognises that improved access “requires a flexible and multi-faceted approach to intellectual property (IP) protection,” according to a press release.

GSK is evolving its graduated approach to filing and enforcing patents so that IP protection reflects a country’s economic maturity, said the release.

“For Least Developed Countries (LDCs) and Low Income Countries (LICs), GSK will not file patents for its medicines, so as to give clarity and confidence to generic companies seeking to manufacture and supply generic versions of GSK medicines in those countries.”

“For Lower Middle Income Countries (LMICs) generally, GSK will file for patents but will seek to offer and agree licences to allow supplies of generic versions of its medicines for 10 years.” A small royalty on sales is envisaged for those countries, said the release.

For the rest of the countries, GSK “will continue to seek full patent protection...”"

“Other companies, such as Roche, Novartis, Bayer, Astellas, and BMS, with important oncology drugs should begin to engage on expanding access to their patented medicines, beyond just HIV and HCV drugs,” KEI urged."

Leading Scientific Institutions Agree to Share Zika Research Data; Gizmodo, 2/10/16

George Dvorsky, Gizmodo; Leading Scientific Institutions Agree to Share Zika Research Data:

"Scientists are typically tight-lipped when it comes to their research, but desperate times call for desperate measures. In an effort to battle the ongoing Zika epidemic, a number of global health bodies—including academic journals, charities, and institutes—have committed to sharing data on the virus.

The statement, signed by over 30 organizations, is meant to ensure that any information relevant to combating Zika is made freely and openly available to the international community as “soon as is feasibly possible.” Signatories include the Bill and Melinda Gates Foundation, Doctors Without Borders, PLOS, the U.S. Centers for Disease Control and Prevention (along with the Chinese equivalent), the JAMA Network, and the U.S. National Institutes of Health. Researchers who signed the agreement were assured that their work would still be eligible for publication in science journals.

“Research is an essential part of the response to any global health emergency,” said Jeremy Farrar of the Wellcome Trust and a signatory of the statement. “This is particularly true for Zika, where so much is still unknown about the virus, how it is spread and the possible link with microcephaly.” It’s critical, he said, that results are shared rapidly and in a way that’s “equitable, ethical and transparent.”

This move follows a recent WHO consultation held in early September 2015 in which leading international stakeholders agreed that the “timely and transparent pre-publication” of scientific data and results “must become the global norm.”"

Stephen Hawking, Russian Billionaire Launch New Alien-Hunting Effort; Huffington Post, 7/20/15

Jacqueline Howard, Huffington Post; Stephen Hawking, Russian Billionaire Launch New Alien-Hunting Effort:

"At the Royal Society in London today, the famed physicist and Russian tech billionaire Yuri Milner announced the launch of a $100-million initiative to search for signs of intelligent life beyond Earth, BBC News reported. The initiative -- part of the Breakthrough Initiatives group -- is named Breakthrough Listen.

"With Breakthrough Listen, we’re committed to bringing the Silicon Valley approach to the search for intelligent life in the universe," Milner said in a written statement. "Our approach to data will be open and taking advantage of the problem-solving power of social networks."...

Milner said the search will be transparent and will rely on open-source software so that its findings can be shared with space enthusiasts around the world."

Federal CIOs, Take Open Data To Next Level; Information Week, 5/29/14

Bobby Caudill, Information Week; Federal CIOs, Take Open Data To Next Level:

"A prime example comes from the State of Michigan's Department of Human Services (DHS). Sadly, there are parents who opt to neglect their financial obligations to their children. Such individuals take steps to hide from the authorities, oftentimes using false contact information. In order to help get child support payments into the hands of the single parents in need, DHS asked a simple question: "How can we find these people?" The answer was in open data.

The data immediately available to the agency was not enough, so DHS looked to other sources in the state. Starting with the Secretary of State, DHS secured access to state drivers' license data. Gaining access to the contact information of the millions of people who are licensed to drive had a huge impact, but DHS found even more valuable information at the Department of Natural Resources (DNR). It turns out people don't think to falsify information when applying for hunting or fishing licenses. By integrating that information with its existing data, the agency could finally take action to help those in need. From my perspective, this is true innovation."

Sharing of Data Leads to Progress on Alzheimer’s; New York Times, 8/13/10

Gina Kolata, New York Times; Sharing of Data Leads to Progress on Alzheimer’s:

"The key to the Alzheimer’s project was an agreement as ambitious as its goal: not just to raise money, not just to do research on a vast scale, but also to share all the data, making every single finding public immediately, available to anyone with a computer anywhere in the world.

No one would own the data. No one could submit patent applications, though private companies would ultimately profit from any drugs or imaging tests developed as a result of the effort.

“It was unbelievable,” said Dr. John Q. Trojanowski, an Alzheimer’s researcher at the University of Pennsylvania. “It’s not science the way most of us have practiced it in our careers. But we all realized that we would never get biomarkers unless all of us parked our egos and intellectual-property noses outside the door and agreed that all of our data would be public immediately.”

http://www.nytimes.com/2010/08/13/health/research/13alzheimer.html?pagewanted=2&_r=1&ref=homepage&src=me