Alexandra S. Levine , Forbes; Suicide Hotline Left Ethics Board Out Of The Loop About Data-Sharing With For-Profit Spinoff
"“Data-sharing with a for-profit company? That's bad... and you can't get consent from people for that in the moment when they're signing up with [a] crisis,” Ranney says. “This would never have passed a sniff test.”"
, The New York Times; Balancing Privacy With Data Sharing for the Public Good
"Governments and technology companies are increasingly collecting vast amounts of personal data, prompting new laws, myriad investigations and calls for stricter regulation to protect individual privacy.
Yet despite these issues, economics tells us that society needs more data sharing rather than less, because the benefits of publicly available data often outweigh the costs. Public access to sensitive health records sped up the development of lifesaving medical treatments like the messenger-RNA coronavirus vaccinesproduced by Moderna and Pfizer. Better economic data could vastly improve policy responses to the next crisis."
"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."
"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?”"
"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."
"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."
"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.”"
"Millions of Cuban citizens could have affordable access to the Internet in a matter of months. The only thing keeping the island in the digital Dark Ages is a lack of political will. Cuban officials have long blamed the American embargo for their nation’s obsolete telecommunications systems. They no longer have that excuse. Regulatory changes the Obama administration put in place this year provide Havana with a number of options to expand Internet coverage quickly and sharply. If the government took advantage of that, the island’s anemic economy could get a much-needed jolt, and young Cubans who are determined to emigrate, a powerful reason to reconsider."
