Balancing Benefits and Risks of Immortal Data Participants’ Views of Open Consent in the Personal Genome Project; Hastings Center Report, 12/17/15

Oscar A. Zarate, Julia Green Brody, Phil Brown, Monica D. Ramirez-Andreotta, Laura Perovich andJacob Matz, Hastings Center Report; Balancing Benefits and Risks of Immortal Data: Participants’ Views of Open Consent in the Personal Genome Project:

"Abstract

An individual's health, genetic, or environmental-exposure data, placed in an online repository, creates a valuable shared resource that can accelerate biomedical research and even open opportunities for crowd-sourcing discoveries by members of the public. But these data become “immortalized” in ways that may create lasting risk as well as benefit. Once shared on the Internet, the data are difficult or impossible to redact, and identities may be revealed by a process called data linkage, in which online data sets are matched to each other. Reidentification (re-ID), the process of associating an individual's name with data that were considered deidentified, poses risks such as insurance or employment discrimination, social stigma, and breach of the promises often made in informed-consent documents. At the same time, re-ID poses risks to researchers and indeed to the future of science, should re-ID end up undermining the trust and participation of potential research participants.

The ethical challenges of online data sharing are heightened as so-called big data becomes an increasingly important research tool and driver of new research structures. Big data is shifting research to include large numbers of researchers and institutions as well as large numbers of participants providing diverse types of data, so the participants’ consent relationship is no longer with a person or even a research institution. In addition, consent is further transformed because big data analysis often begins with descriptive inquiry and generation of a hypothesis, and the research questions cannot be clearly defined at the outset and may be unforeseeable over the long term. In this article, we consider how expanded data sharing poses new challenges, illustrated by genomics and the transition to new models of consent. We draw on the experiences of participants in an open data platform—the Personal Genome Project—to allow study participants to contribute their voices to inform ethical consent practices and protocol reviews for big-data research."

Without Copyright Infringement, Deadpool Doesn't Get Made; TechDirt.com, 2/16/16

Tim Cushing, TechDirt.com; Without Copyright Infringement, Deadpool Doesn't Get Made:

"Sure, leaking test footage isn't like leaking an entire film, but without that happening, nothing else does. The movie is never made and Fox doesn't have almost three times the budget grossed within the first four days of ticket sales. But because this leak happened, the studio is likely in control of a promising franchise, provided it can keep the lightning bottled and push forward without discarding everything that makes Deadpool Deadpool. And everyone involved can thank the unnamed person they won't rat out for shrugging off the insular "power" of copyright and mobilizing a fan base that is now making good on its promise to support the movie."

Gearing Up for the Cloud, AT&T Tells Its Workers: Adapt, or Else; New York Times, 2/13/16

Quentin Hardy, New York Times; Gearing Up for the Cloud, AT&T Tells Its Workers: Adapt, or Else:

"To Mr. Stephenson, it should be an easy choice for most workers: Learn new skills or find your career choices are very limited.

“There is a need to retool yourself, and you should not expect to stop,” he said in a recent interview at AT&T’s Dallas headquarters. People who do not spend five to 10 hours a week in online learning, he added, “will obsolete themselves with the technology.”...

By 2020, Mr. Stephenson hopes AT&T will be well into its transformation into a computing company that manages all sorts of digital things: phones, satellite television and huge volumes of data, all sorted through software managed in the cloud.

That can’t happen unless at least some of his work force is retrained to deal with the technology. It’s not a young group: The average tenure at AT&T is 12 years, or 22 years if you don’t count the people working in call centers. And many employees don’t have experience writing open-source software or casually analyzing terabytes of customer data."

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.”"

Researcher illegally shares millions of science papers free online to spread knowledge; Science Alert, 2/12/16

Fiona MacDonald, Science Alert; Researcher illegally shares millions of science papers free online to spread knowledge:

"A researcher in Russia has made more than 48 million journal articles - almost every single peer-reviewed paper every published - freely available online. And she's now refusing to shut the site down, despite a court injunction and a lawsuit from Elsevier, one of the world's biggest publishers.

For those of you who aren't already using it, the site in question is Sci-Hub, and it's sort of like a Pirate Bay of the science world. It was established in 2011 by neuroscientist Alexandra Elbakyan, who was frustrated that she couldn't afford to access the articles needed for her research, and it's since gone viral, with hundreds of thousands of papers being downloaded daily. But at the end of last year, the site was ordered to be taken down by a New York district court - a ruling that Elbakyan has decided to fight, triggering a debate over who really owns science."