Open Data: Why We Should Care; Huffington Post, 3/17/16

Apolitical, Huffington Post; Open Data: Why We Should Care:

"Excited by the connectivity revolution, governments all over the world are trying to find clever uses for the enormous amounts of digital information they now possess. One of the Big Data movements with the most momentum is Open Data — making this information available to the public. But what good does this actually do? Apolitical spoke to three pioneers in the field in Burkina Faso, Brazil and India, who told us about fighting corruption, ensuring free elections and preventing crime. These real, substantive issues go beyond the inevitably vague buzzwords of transparency and accountability. Here we discover what Open Data can really do about them."

Sara Fine Institute presents: Christine Borgman, "Big Data, Open Data, and Scholarship": Mon Feb 29th 3.00pm - 5.00pm, University of Pittsburgh

Sara Fine Institute presents: Christine Borgman, "Big Data, Open Data, and Scholarship" :

"Monday Feb 29th 3.00pm - 5.00pm

University Club, Ballroom A, 123 University Pl, Pittsburgh, PA 15260

"Big Data, Open Data, and Scholarship"

by Christine L. Borgman

Distinguished Professor & Presidential Chair in Information Studies

University of California, Los Angeles

Scholars gathered data long before the emergence of books, journals, libraries, publishers, or the Internet. Until recently, data were considered part of the process of scholarship, essential but largely invisible. In the “big data” era, the products of these research processes have become valuable objects in themselves to be captured, shared, reused, and sustained for the long term. Data also has become contentious intellectual property to be protected, whether for proprietary, confidentiality, competition, or other reasons. Public policy leans toward open access to research data, but rarely with the public investment necessary to sustain access. Enthusiasm for big data is obscuring the complexity and diversity of data in scholarship and the challenges for stewardship. Data practices are local, varying from field to field, individual to individual, and country to country. This talk will explore the stakes and stakeholders in research data and implications for policy and practice.

Join us Feb. 29, 2016 at 3pm at the University of Pittsburgh’s University Club (Ballroom A). This event is free to attend and no RSVP is required. A reception will follow."

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."

Give Up Your Data to Cure Disease; New York Times, 2/6/16

David B. Agus, New York Times; Give Up Your Data to Cure Disease:

"HOW far would you go to protect your health records? Your privacy matters, of course, but consider this: Mass data can inform medicine like nothing else and save countless lives, including, perhaps, your own.

Over the past several years, using some $30 billion in federal stimulus money, doctors and hospitals have been installing electronic health record systems. More than 80 percent of office-based doctors, including me, use some form of E.H.R. These systems are supposed to make things better by giving people easier access to their medical information and avoiding the duplication of tests and potentially fatal errors.

Yet neither doctors nor patients are happy. Doctors complain about the time it takes to update digital records, while patients worry about confidentiality. Last month the Association of American Physicians and Surgeons went so far as to warn that E.H.R.s could “crash” the medical system.

We need to get over it. These digital databases offer an incredible opportunity to examine trends that will fundamentally change how doctors treat patients. They will help develop cures, discover new uses for drugs and better track the spread of scary new illnesses like the Zika virus."

Open data's Achilles heel: re-identification; ZDNet, 9/3/14

Rob O'Neill, ZDNet; Open data's Achilles heel: re-identification:

'Governments around the globe are embracing the mantra of open data and talking up its productivity benefits, but none have so far made the re-identification of this mass of anonymised data illegal... The possibility of outlawing re-identification is now being discussed in New Zealand, with both the Privacy Commissioner, John Edwards, and a May report (pdf) from the New Zealand Data futures Forum suggesting legal protections against re-identification may be necessary.

Edwards told ZDNet he is trying to look towards the future and ensure that the value in government data can be safely extracted in ways that maintain public confidence.

“One of the methods might be a prohibition on re-identification. If we did that we would be world leaders," he said.

Similarly, the Data Futures Forum report said it is necessary to develop a "robust data-use ecosystem" and to get the rules around open data right. This should include a data council to act as guardians and advisers, and a broad review of legislation."