Addressing the Alarming Systems of Surveillance Built By Library Vendors – SPARC

“On April 2nd, news broke that RELX subsidiary LexisNexis signed a multi-million dollar contract with U.S. Immigration and Customs Enforcement (ICE). According to reporting on the ICE contract by the Intercept, LexisNexis’ databases “offer an oceanic computerized view of a person’s existence” and will provide the agency with “the data it needs to locate people with little if any oversight.” 

While this contract may be new, it is just the latest development in an alarming trend that SPARC is following. Two major library vendors—RELX and Thomson Reuters—have been building sophisticated, global systems of surveillance that include online tracking technologies, massive aggregation of user data, and the sale of services based on this tracking, including to governments and law enforcement. 

Dollars from library subscriptions, directly or indirectly, now support these systems of surveillance. This should be deeply concerning to the library community and to the millions of faculty and students who use their products each day and further underscores the urgency of privacy protections as library services—and research and education more generally—are now delivered primarily online. …

As alarming as these surveillance technologies are in their own right, they may already be crossing into academic products. Surveillance researcher Wolfie Christl has reported ThreatMetrix tracking code is now embedded in the ScienceDirect website, raising serious questions about what patron information is being collected and toward what purposes….

The Library Freedom Project’s Vendor Privacy Scorecard highlights the many privacy concerns across a wide selection of library vendors….”

Openness in Big Data and Data Repositories | SpringerLink

Abstract:  There is a growing expectation, or even requirement, for researchers to deposit a variety of research data in data repositories as a condition of funding or publication. This expectation recognizes the enormous benefits of data collected and created for research purposes being made available for secondary uses, as open science gains increasing support. This is particularly so in the context of big data, especially where health data is involved. There are, however, also challenges relating to the collection, storage, and re-use of research data. This paper gives a brief overview of the landscape of data sharing via data repositories and discusses some of the key ethical issues raised by the sharing of health-related research data, including expectations of privacy and confidentiality, the transparency of repository governance structures, access restrictions, as well as data ownership and the fair attribution of credit. To consider these issues and the values that are pertinent, the paper applies the deliberative balancing approach articulated in the Ethics Framework for Big Data in Health and Research (Xafis et al. 2019) to the domain of Openness in Big Data and Data Repositories. Please refer to that article for more information on how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end.

 

Openness in Big Data and Data Repositories | SpringerLink

Abstract:  There is a growing expectation, or even requirement, for researchers to deposit a variety of research data in data repositories as a condition of funding or publication. This expectation recognizes the enormous benefits of data collected and created for research purposes being made available for secondary uses, as open science gains increasing support. This is particularly so in the context of big data, especially where health data is involved. There are, however, also challenges relating to the collection, storage, and re-use of research data. This paper gives a brief overview of the landscape of data sharing via data repositories and discusses some of the key ethical issues raised by the sharing of health-related research data, including expectations of privacy and confidentiality, the transparency of repository governance structures, access restrictions, as well as data ownership and the fair attribution of credit. To consider these issues and the values that are pertinent, the paper applies the deliberative balancing approach articulated in the Ethics Framework for Big Data in Health and Research (Xafis et al. 2019) to the domain of Openness in Big Data and Data Repositories. Please refer to that article for more information on how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end.

 

Ants-Review: A Privacy-Oriented Protocol for Incentivized Open Peer Reviews on Ethereum

Abstract. Peer review is a necessary and essential quality control step for scienti?c publications but lacks proper incentives. Indeed, the process, which is very costly in terms of time and intellectual investment, not only is not remunerated by the journals but it is also not openly recognized by the academic community as a relevant scienti?c output for a researcher. Therefore, scienti?c dissemination is a?ected in timeliness, quality and fairness. Here, to solve this issue, we propose a blockchainbased incentive system that rewards scientists for peer reviewing other scientists’ work and that builds up trust and reputation. We designed a privacy-oriented protocol of smart contracts called Ants-Review that allows authors to issue a bounty for open anonymous peer reviews on Ethereum. If requirements are met, peer reviews will be accepted and paid by the approver proportionally to their assessed quality. To promote ethical behaviour and inclusiveness the system implements a gami?ed mechanism that allows the whole community to evaluate the peer reviews and vote for the best ones.

A View Of The Future Of Our Data

“Similarly, many well-intentioned advocates of open data failed to see how free information has always concentrated power in the owners of the fastest information-processing machines. Like the publishers of centuries past, the richest technology companies will always lead in extracting value from open data, giving them unearned leverage over the rest of society. So putting data into the public domain actually does precisely the opposite of leveling the playing field.

If individual data ownership is Scylla, the mythical sea monster who devoured unwary sailors, then open data is Charybdis, the whirlpool near Scylla’s cave. Finding the narrow path between the two means treating data like a police force or a water system — that is, as the subject of widely shared yet deeply responsible governance….”

Large-scale ICU data sharing for global collaboration: the first 1633 critically ill COVID-19 patients in the Dutch Data Warehouse | SpringerLink

“Given these considerations, a large-scale ICU data sharing collaboration in The Netherlands was initiated for the COVID-19 pandemic, resulting in the Dutch Data Warehouse (DDW, Fig. 1). While the database is growing, at this point, the DDW combines pseudonymized EHR data from 23 intensive care units covering the entire ICU admission of all adult COVID-19 patients treated in these ICUs. Collected data include data from monitoring and life support devices, demographics, medication, fluid balance, comorbidities, laboratory results, and outcomes. All parameters were manually reviewed by intensive care professionals and mapped to a common ontology. A software data pipeline converted units, filtered data entry errors, and calculated derived clinical parameters. Data validation was a continuous process including hospital data verification and visual inspection of distribution plots….”

Balancing Privacy With Data Sharing for the Public Good – The New York Times

“This data protection agency could be combined with Data.gov, a government website created in 2009 that assembles and hosts hundreds of thousands of data sets for public use. Together they could form a kind of federal data library, democratizing knowledge for the digital age.

Just as traditional libraries curate and organize their collections, so could a digital library, adding new data sources and cleaning and assembling them for public use. A federal data library could also take the lead in developing and using new tools such as differential privacy, a technique designed to preserve important features of data while protecting individual identities.

Data’s increasing value as an economic resource requires a new way of thinking. Strict privacy protections are needed to make socially valuable data available for the public good.”

Open Science to Address COVID-19: Sharing Data to Make Our Research Investment Go Further | SpringerLink

“Over 1000 randomized clinical trials (RCTs) for the treatment and prevention of COVID-19 have been initiated. With access to the data from RCTs, researchers can integrate and summarize findings, evaluate new hypotheses, design future trials, and prioritize the next research questions to be addressed. This ensures that the value from the investment in the RCTs goes beyond the original intent of the trial protocols. None of this is possible without first having easy and responsible systems to allow access to data: the primary tenets of the open science FAIR principles dictate a proactive intent to share results and patient data from clinical trials [Wilkinson]. While much has been written and progress has been made, there is more to be done in this journey to true openness [Rockhold]. Reasons for this include (1) the well-known complexities of data access (patient privacy, content of the trial’s informed consent and the primary data holder’s decision rights as to sharing), (2) concerns about mis-interpretation of data in the context of secondary research (beyond the original intent of the trial), and (3) the use of platform trials where multiple intervention arms are studied relative to a single control arm.

The International COVID-19 Data Alliance (ICODA) is one of the groups initiating concerted data sharing as a powerful mechanism to address COVID-19. We focus our attention to RCTs recognizing that the Alliance will encompass many other data types….”

Open Access: A citizen’s guide to discovering who holds your info – and what’s in there

“When people think of getting information from public bodies, they often think of Freedom of Information (FOI). But when it comes to accessing records which contain your personal information, there are now more avenues than FOI.

Of course, it’s still a useful route – while many think of the FOI request as the preserve of journalists for stories about politicians’ expenses or the behind the scenes of some dubious government decision, in fact of the nearly 40,000 FOI requests last year, nearly 60% were for personal information….”

 

The Health care data sharing rule and its roots at Boston Children’s Hospital – Discoveries

“Are you sick of health care systems not communicating with each other? Do you wish you could access more of your medical information — or your patients’ information — online? Do you ever wonder whether a health pattern you see is part of a larger trend? Two key developments have advanced the vision of seamless, secure exchange of electronic health records (EHRs) among health care institutions and patients.

That vision includes being able to learn from our data at a population scale. Through federal regulations issued this year, it will finally become reality in 2022. And the vision began at Boston Children’s Hospital more than a decade ago….”