research paper / thesis / dissertation

Simplexity

Curated on April 13, 2016August 3, 2018 by Stefaan Verhulst

Paper by Joshua D. Blank and Leigh Osofsky: “In recent years, federal government agencies have increasingly attempted to use plain language in written communications with the public. The Plain Writing Act of 2010, for instance, requires agencies to incorporate “clear and simple” explanations of rules and regulations into their official publications. In the tax context, as part of its “customer service” mission, the Internal Revenue Service bears a “duty to explain” the tax law to hundreds of millions of taxpayers who file tax returns each year. Proponents of the plain language movement have heralded this form of communication as leading to simplicity in tax compliance, more equitable access to federal programs and increased open government.

This Article casts plain language efforts in a different light. As we argue, rather than achieving simplicity, which would involve reform of the underlying law, the use of plain language to describe complex legal rules and regulations often yields “simplexity.” As we define it, simplexity occurs when the government presents clear and simple explanations of the law without highlighting its underlying complexity or reducing this complexity through formal legal changes. We show that in its numerous taxpayer publications, the IRS frequently uses plain language to transform complex, often ambiguous tax law into seemingly simple statements that (1) present contested tax law as clear tax rules, (2) add administrative gloss to the tax law and (3) fail to fully explain the tax law, including possible exceptions. Sometimes these plain language explanations benefit the government; at other times, they benefit taxpayers.

While simplexity offers a number of potential tax administration benefits, such as making the tax law understandable and even bolstering the IRS’s ability to collect tax revenue, it can also threaten vital values of transparency and democratic governance and can result in inequitable treatment of different taxpayers. We offer approaches for preserving some of the benefits of simplexity while also responding to some of its drawbacks. We also forecast the likely emergence of simplexity in potential future tax compliance measures, such as government-prepared tax returns, interactive tax return filing and increased third-party reporting….(More)”.

Infomediaries and accountability

Curated on April 13, 2016August 3, 2018 by Stefaan Verhulst

Paper by Becky Carter: “A synthesis of what the existing evidence says (and where there are gaps) on:

1) What role might ‘infomediaries’, and specifically the media have in helping translate transparency into greater government accountability? In generating that accountability? In empowering citizens?

2) In what contexts or types of contexts do ‘infomediaries’ and media play such a facilitating role, and why?

3) What enabling factors contributed to success?

4) What role, if any, have donors had in supporting these sectors in this capacity?

5) What risks exist in this space?…(More)”

Open Data and Beyond

Curated on April 12, 2016August 3, 2018 by Stefaan Verhulst

Paper by Frederika Welle Donker, Bastiaan van Loenen and Arnold K. Bregt: “In recent years, there has been an increasing trend of releasing public sector information as open data. Governments worldwide see the potential benefits of opening up their data. The potential benefits are more transparency, increased governmental efficiency and effectiveness, and external benefits, including societal and economic benefits. The private sector also recognizes potential benefits of making their datasets available as open data. One such company is Liander, an energy network administrator in the Netherlands. Liander views open data as a contributing factor to energy conservation. However, to date there has been little research done into the actual effects of open data. This research has developed a monitoring framework to assess the effects of open data, and has applied the framework to Liander’s small-scale energy consumption dataset….(More)“

OpenTrials: towards a collaborative open database of all available information on all clinical trials

Curated on April 11, 2016August 3, 2018 by Stefaan Verhulst

Paper Ben Goldacre and Jonathan Gray at BioMed Central: “OpenTrials is a collaborative and open database for all available structured data and documents on all clinical trials, threaded together by individual trial. With a versatile and expandable data schema, it is initially designed to host and match the following documents and data for each trial: registry entries; links, abstracts, or texts of academic journal papers; portions of regulatory documents describing individual trials; structured data on methods and results extracted by systematic reviewers or other researchers; clinical study reports; and additional documents such as blank consent forms, blank case report forms, and protocols. The intention is to create an open, freely re-usable index of all such information and to increase discoverability, facilitate research, identify inconsistent data, enable audits on the availability and completeness of this information, support advocacy for better data and drive up standards around open data in evidence-based medicine. The project has phase I funding. This will allow us to create a practical data schema and populate the database initially through web-scraping, basic record linkage techniques, crowd-sourced curation around selected drug areas, and import of existing sources of structured and documents. It will also allow us to create user-friendly web interfaces onto the data and conduct user engagement workshops to optimise the database and interface designs. Where other projects have set out to manually and perfectly curate a narrow range of information on a smaller number of trials, we aim to use a broader range of techniques and attempt to match a very large quantity of information on all trials. We are currently seeking feedback and additional sources of structured data….(More)”

What Should We Do About Big Data Leaks?

Curated on April 6, 2016October 10, 2018 by Stefaan Verhulst

Paul Ford at the New Republic: “I have a great fondness for government data, and the government has a great fondness for making more of it. Federal elections financial data, for example, with every contribution identified, connected to a name and address. Or the results of the census. I don’t know if you’ve ever had the experience of downloading census data but it’s pretty exciting. You can hold America on your hard drive! Meditate on the miracles of zip codes, the way the country is held together and addressable by arbitrary sets of digits.

You can download whole books, in PDF format, about the foreign policy of the Reagan Administration as it related to Russia. Negotiations over which door the Soviet ambassador would use to enter a building. Gigabytes and gigabytes of pure joy for the ephemeralist. The government is the greatest creator of ephemera ever.

Consider the Financial Crisis Inquiry Commission, or FCIC, created in 2009 to figure out exactly how the global economic pooch was screwed. The FCIC has made so much data, and has done an admirable job (caveats noted below) of arranging it. So much stuff. There are reams of treasure on a single FCIC web site, hosted at Stanford Law School: Hundreds of MP3 files, for example, with interviews with Jamie Dimonof JPMorgan Chase and Lloyd Blankfein of Goldman Sachs. I am desperate to find time to write some code that automatically extracts random audio snippets from each and puts them on top of a slow ambient drone with plenty of reverb, so that I can relax to the dulcet tones of the financial industry explaining away its failings. (There’s a Paul Krugman interview that I assume is more critical.)

The recordings are just the beginning. They’ve released so many documents, and with the documents, a finding aid that you can download in handy PDF format, which will tell you where to, well, find things, pointing to thousands of documents. That aid alone is 1,439 pages.

Look, it is excellent that this exists, in public, on the web. But it also presents a very contemporary problem: What is transparency in the age of massive database drops? The data is available, but locked in MP3s and PDFs and other documents; it’s not searchable in the way a web page is searchable, not easy to comment on or share.

Consider the WikiLeaks release of State Department cables. They were exhausting, there were so many of them, they were in all caps. Or the trove of data Edward Snowden gathered on aUSB drive, or Chelsea Manning on CD. And the Ashley Madison leak, spread across database files and logs of credit card receipts. The massive and sprawling Sony leak, complete with whole email inboxes. And with the just-released Panama Papers, we see two exciting new developments: First, the consortium of media organizations that managed the leak actually came together and collectively, well, branded the papers, down to a hashtag (#panamapapers), informational website, etc. Second, the size of the leak itself—2.5 terabytes!—become a talking point, even though that exact description of what was contained within those terabytes was harder to understand. This, said the consortia of journalists that notably did not include The New York Times, The Washington Post, etc., is the big one. Stay tuned. And we are. But the fact remains: These artifacts are not accessible to any but the most assiduous amateur conspiracist; they’re the domain of professionals with the time and money to deal with them. Who else could be bothered?

If you watched the movie Spotlight, you saw journalists at work, pawing through reams of documents, going through, essentially, phone books. I am an inveterate downloader of such things. I love what they represent. And I’m also comfortable with many-gigabyte corpora spread across web sites. I know how to fetch data, how to consolidate it, and how to search it. I share this skill set with many data journalists, and these capacities have, in some ways, become the sole province of the media. Organs of journalism are among the only remaining cultural institutions that can fund investigations of this size and tease the data apart, identifying linkages and thus constructing informational webs that can, with great effort, be turned into narratives, yielding something like what we call “a story” or “the truth.”

Spotlight was set around 2001, and it features a lot of people looking at things on paper. The problem has changed greatly since then: The data is everywhere. The media has been forced into a new cultural role, that of the arbiter of the giant and semi-legal database. ProPublica, a nonprofit that does a great deal of data gathering and data journalism and then shares its findings with other media outlets, is one example; it funded a project called DocumentCloud with other media organizations that simplifies the process of searching through giant piles of PDFs (e.g., court records, or the results of Freedom of Information Act requests).

At some level the sheer boredom and drudgery of managing these large data leaks make them immune to casual interest; even the Ashley Madison leak, which I downloaded, was basically an opaque pile of data and really quite boring unless you had some motive to poke around.

If this is the age of the citizen journalist, or at least the citizen opinion columnist, it’s also the age of the data journalist, with the news media acting as product managers of data leaks, making the information usable, browsable, attractive. There is an uneasy partnership between leakers and the media, just as there is an uneasy partnership between the press and the government, which would like some credit for its efforts, thank you very much, and wouldn’t mind if you gave it some points for transparency while you’re at it.

Pause for a second. There’s a glut of data, but most of it comes to us in ugly formats. What would happen if the things released in the interest of transparency were released in actual transparent formats?…(More)”

Website Seeks to Make Government Data Easier to Sift Through

Curated on April 5, 2016August 3, 2018 by Stefaan Verhulst

Steve Lohr at the New York Times: “For years, the federal government, states and some cities have enthusiastically made vast troves of data open to the public. Acres of paper records on demographics, public health, traffic patterns, energy consumption, family incomes and many other topics have been digitized and posted on the web.

This abundance of data can be a gold mine for discovery and insights, but finding the nuggets can be arduous, requiring special skills.

A project coming out of the M.I.T. Media Lab on Monday seeks to ease that challenge and to make the value of government data available to a wider audience. The project, called Data U S A, bills itself as “the most comprehensive visualization of U.S. public data.” It is free, and its software code is open source, meaning that developers can build custom applications by adding other data.

Cesar A. Hidalgo, an assistant professor of media arts and sciences at the M.I.T. Media Lab who led the development of Data USA, said the website was devised to “transform data into stories.” Those stories are typically presented as graphics, charts and written summaries….Type “New York” into the Data USA search box, and a drop-down menu presents choices — the city, the metropolitan area, the state and other options. Select the city, and the page displays an aerial shot of Manhattan with three basic statistics: population (8.49 million), median household income ($52,996) and median age (35.8).

Lower on the page are six icons for related subject categories, including economy, demographics and education. If you click on demographics, one of the so-called data stories appears, based largely on data from the American Community Survey of the United States Census Bureau.

Using colorful graphics and short sentences, it shows the median age of foreign-born residents of New York (44.7) and of residents born in the United States (28.6); the most common countries of origin for immigrants (the Dominican Republic, China and Mexico); and the percentage of residents who are American citizens (82.8 percent, compared with a national average of 93 percent).

Data USA features a selection of data results on its home page. They include the g ender w age g ap in Connecticut; the r acial b reakdown of po verty in Flint, Mich.; the wages of p hysicians and s urgeons across the United States; and the institutions that award the most c omputer s cience degrees….(More)

Selected Readings on Data and Humanitarian Response

Curated on April 3, 2016May 29, 2019 by Stefaan Verhulst

By Prianka Srinivasan and Stefaan G. Verhulst *

The Living Library’s Selected Readings series seeks to build a knowledge base on innovative approaches for improving the effectiveness and legitimacy of governance. This curated and annotated collection of recommended works on the topic of data and humanitarian response was originally published in 2016.

Data, when used well in a trusted manner, allows humanitarian organizations to innovate how to respond to emergency events, including better coordination of post-disaster relief efforts, the ability to harness local knowledge to create more targeted relief strategies, and tools to predict and monitor disasters in real time. Consequently, in recent years both multinational groups and community-based advocates have begun to integrate data collection and evaluation strategies into their humanitarian operations, to better and more quickly respond to emergencies. However, this movement poses a number of challenges. Compared to the private sector, humanitarian organizations are often less equipped to successfully analyze and manage big data, which pose a number of risks related to the security of victims’ data. Furthermore, complex power dynamics which exist within humanitarian spaces may be further exacerbated through the introduction of new technologies and big data collection mechanisms. In the below we share:

Selected Reading List (summaries and hyperlinks)
Annotated Selected Reading List
Additional Readings

Selected Reading List (summaries in alphabetical order)

Data and Humanitarian Response

John Karlsrud – Peacekeeping 4.0: Harnessing the Potential of Big Data, Social Media, and Cyber Technologies – Recommends that UN peacekeeping initiatives should better integrate big data and new technologies into their operations, adopting a “Peacekeeping 4.0” for the modern world.
Fancesco Mancini, International Peace Institute – New Technology and the prevention of Violence and Conflict – Explores the ways in which new tools available in communications technology can assist humanitarian workers in preventing violence and conflict.
Patrick Meier – Digital Humanitarians- How Big Data is changing the face of humanitarian response – Profiles the emergence of ‘Digital Humanitarians’—humanitarian workers who are using big data, crowdsourcing and new technologies to transform the way societies respond to humanitarian disasters.
Andrew Robertson and Steve Olson (USIP) – Using Data Sharing to Improve Coordination in Peacebuilding – Summarises the findings of a United States Institute of Peace workshop which investigated the use of data-sharing systems between government and non-government actors in conflict zones. It identifies some of the challenges and benefits of data-sharing in peacebuilding efforts.
United Nations Independent Expert Advisory Group on a Data Revolution for Sustainable Development – A World That Counts, Mobilizing the Data Revolution – Compiled by a group of 20 international experts, this report proposes ways to improve data management and monitoring, whilst mitigating some of the risks data poses.
Katie Whipkey and Andrej Verity – Guidance for Incorporating Big Data into Humanitarian Operations – Created as part of the Digital Humanitarian Network with the support of UN-OCHA, this is a manual for humanitarian organizations looking to strategically incorporate Big Data into their work.

Risks of Using Big Data in Humanitarian Context

Kate Crawford and Megan Finn – The limits of crisis data: analytical and ethical challenges of using social and mobile data to understand disasters – Analyzes the use of big data techniques following a crisis event, arguing that a reliance of social and mobile data can lead to significant oversights and ethical concerns in the wake of humanitarian disasters.
Katja Lindskov Jacobsen – Making design safe for citizens: A hidden history of humanitarian experimentation – Argues that the UNHCR’s use of iris recognition technology in 2002 and 2007 during the repatriation of Afghan refugees from Pakistan constitutes a case of “humanitarian experimentation.” It questions this sort of experimentation which compromises the security of refugees in the pursuit of safer technologies for the rest of the world.
Responsible Data Forum – Responsible Data Reflection Stories: an Overview – compiles various stories sourced by the Responsible Data Forum blog relating to data challenges faced by advocacy organizations, and draws recommendations based on these cases.
Kristin Bergtora Sandvik – The humanitarian cyberspace: shrinking space or an expanding frontier? – Provides a detailed account of the development of a “humanitarian cyberspace” and how information and communication technologies have been further integrated into humanitarian operations since the mid-1990s.

Annotated Selected Reading List (in alphabetical order)

Karlsrud, John. “Peacekeeping 4.0: Harnessing the Potential of Big Data, Social Media, and Cyber Technologies.” Cyberspace and International Relations, 2013. http://bit.ly/235Qb3e

This chapter from the book “Cyberspace and International Relations” suggests that advances in big data give humanitarian organizations unprecedented opportunities to prevent and mitigate natural disasters and humanitarian crises. However, the sheer amount of unstructured data necessitates effective “data mining” strategies for multinational organizations to make the most use of this data.
By profiling some civil-society organizations who use big data in their peacekeeping efforts, Karlsrud suggests that these community-focused initiatives are leading the movement toward analyzing and using big data in countries vulnerable to crisis.
The chapter concludes by offering ten recommendations to UN peacekeeping forces to best realize the potential of big data and new technology in supporting their operations.

Mancini, Fancesco. “New Technology and the prevention of Violence and Conflict.” International Peace Institute, 2013. http://bit.ly/1ltLfNV

This report from the International Peace Institute looks at five case studies to assess how information and communications technologies (ICTs) can help prevent humanitarian conflicts and violence. Their findings suggest that context has a significant impact on the ability for these ICTs for conflict prevention, and any strategies must take into account the specific contingencies of the region to be successful.
The report suggests seven lessons gleaned from the five case studies:
- New technologies are just one in a variety of tools to combat violence. Consequently, organizations must investigate a variety of complementary strategies to prevent conflicts, and not simply rely on ICTs.
- Not every community or social group will have the same relationship to technology, and their ability to adopt new technologies are similarly influenced by their context. Therefore, a detailed needs assessment must take place before any new technologies are implemented.
- New technologies may be co-opted by violent groups seeking to maintain conflict in the region. Consequently, humanitarian groups must be sensitive to existing political actors and be aware of possible negative consequences these new technologies may spark.
- Local input is integral to support conflict prevention measures, and there exists need for collaboration and awareness-raising with communities to ensure new technologies are sustainable and effective.
- Information shared between civil-society has more potential to develop early-warning systems. This horizontal distribution of information can also allow communities to maintain the accountability of local leaders.

Meier, Patrick. “Digital humanitarians: how big data is changing the face of humanitarian response.” Crc Press, 2015. http://amzn.to/1RQ4ozc

This book traces the emergence of “Digital Humanitarians”—people who harness new digital tools and technologies to support humanitarian action. Meier suggests that this has created a “nervous system” to connect people from disparate parts of the world, revolutionizing the way we respond to humanitarian crises.
Meier argues that such technology is reconfiguring the structure of the humanitarian space, where victims are not simply passive recipients of aid but can contribute with other global citizens. This in turn makes us more humane and engaged people.

Robertson, Andrew and Olson, Steve. “Using Data Sharing to Improve Coordination in Peacebuilding.” United States Institute for Peace, 2012. http://bit.ly/235QuLm

This report functions as an overview of a roundtable workshop on Technology, Science and Peace Building held at the United States Institute of Peace. The workshop aimed to investigate how data-sharing techniques can be developed for use in peace building or conflict management.
Four main themes emerged from discussions during the workshop:
- “Data sharing requires working across a technology-culture divide”—Data sharing needs the foundation of a strong relationship, which can depend on sociocultural, rather than technological, factors.
- “Information sharing requires building and maintaining trust”—These relationships are often built on trust, which can include both technological and social perspectives.
- “Information sharing requires linking civilian-military policy discussions to technology”—Even when sophisticated data-sharing technologies exist, continuous engagement between different stakeholders is necessary. Therefore, procedures used to maintain civil-military engagement should be broadened to include technology.
- “Collaboration software needs to be aligned with user needs”—technology providers need to keep in mind the needs of its users, in this case peacebuilders, in order to ensure sustainability.

United Nations Independent Expert Advisory Group on a Data Revolution for Sustainable Development. “A World That Counts, Mobilizing the Data Revolution.” 2014. https://bit.ly/2Cb3lXq

This report focuses on the potential benefits and risks data holds for sustainable development. Included in this is a strategic framework for using and managing data for humanitarian purposes. It describes a need for a multinational consensus to be developed to ensure data is shared effectively and efficiently.
It suggests that “people who are counted”—i.e., those who are included in data collection processes—have better development outcomes and a better chance for humanitarian response in emergency or conflict situations.

Katie Whipkey and Andrej Verity. “Guidance for Incorporating Big Data into Humanitarian Operations.” Digital Humanitarian Network, 2015. http://bit.ly/1Y2BMkQ

This report produced by the Digital Humanitarian Network provides an overview of big data, and how humanitarian organizations can integrate this technology into their humanitarian response. It primarily functions as a guide for organizations, and provides concise, brief outlines of what big data is, and how it can benefit humanitarian groups.
The report puts forward four main benefits acquired through the use of big data by humanitarian organizations: 1) the ability to leverage real-time information; 2) the ability to make more informed decisions; 3) the ability to learn new insights; 4) the ability for organizations to be more prepared.
It goes on to assess seven challenges big data poses for humanitarian organizations: 1) geography, and the unequal access to technology across regions; 2) the potential for user error when processing data; 3) limited technology; 4) questionable validity of data; 5) underdeveloped policies and ethics relating to data management; 6) limitations relating to staff knowledge.

Risks of Using Big Data in Humanitarian Context
Crawford, Kate, and Megan Finn. “The limits of crisis data: analytical and ethical challenges of using social and mobile data to understand disasters.” GeoJournal 80.4, 2015. http://bit.ly/1X0F7AI

Crawford & Finn present a critical analysis of the use of big data in disaster management, taking a more skeptical tone to the data revolution facing humanitarian response.
They argue that though social and mobile data analysis can yield important insights and tools in crisis events, it also presents a number of limitations which can lead to oversights being made by researchers or humanitarian response teams.
Crawford & Finn explore the ethical concerns the use of big data in disaster events introduces, including issues of power, privacy, and consent.
The paper concludes by recommending that critical data studies, such as those presented in the paper, be integrated into crisis event research in order to analyze some of the assumptions which underlie mobile and social data.

Jacobsen, Katja Lindskov (2010) Making design safe for citizens: A hidden history of humanitarian experimentation. Citizenship Studies 14.1: 89-103. http://bit.ly/1YaRTwG

This paper explores the phenomenon of “humanitarian experimentation,” where victims of disaster or conflict are the subjects of experiments to test the application of technologies before they are administered in greater civilian populations.
By analyzing the particular use of iris recognition technology during the repatriation of Afghan refugees to Pakistan in 2002 to 2007, Jacobsen suggests that this “humanitarian experimentation” compromises the security of already vulnerable refugees in order to better deliver biometric product to the rest of the world.

Responsible Data Forum. “Responsible Data Reflection Stories: An Overview.” http://bit.ly/1Rszrz1

This piece from the Responsible Data forum is primarily a compilation of “war stories” which follow some of the challenges in using big data for social good. By drawing on these crowdsourced cases, the Forum also presents an overview which makes key recommendations to overcome some of the challenges associated with big data in humanitarian organizations.
It finds that most of these challenges occur when organizations are ill-equipped to manage data and new technologies, or are unaware about how different groups interact in digital spaces in different ways.

Sandvik, Kristin Bergtora. “The humanitarian cyberspace: shrinking space or an expanding frontier?” Third World Quarterly 37:1, 17-32, 2016. http://bit.ly/1PIiACK

This paper analyzes the shift toward more technology-driven humanitarian work, where humanitarian work increasingly takes place online in cyberspace, reshaping the definition and application of aid. This has occurred along with what many suggest is a shrinking of the humanitarian space.
Sandvik provides three interpretations of this phenomena:
- First, traditional threats remain in the humanitarian space, which are both modified and reinforced by technology.
- Second, new threats are introduced by the increasing use of technology in humanitarianism, and consequently the humanitarian space may be broadening, not shrinking.
- Finally, if the shrinking humanitarian space theory holds, cyberspace offers one example of this, where the increasing use of digital technology to manage disasters leads to a contraction of space through the proliferation of remote services.

Additional Readings on Data and Humanitarian Response

Kristin Bergtora Sandvik, et al. – Humanitarian technology: a critical research agenda. – Takes a critical look at the field of humanitarian technology, analyzing what challenges this poses to post-disaster and conflict environment.
Kristin Bergtora Sandvik – “The Risks of Technological Innovation.” – Suggests that despite the evident benefits such technology presents, it can also undermine humanitarian action and lead to “catastrophic events” themselves needing a new type of humanitarian response.
Ryan Burns – Rethinking big data in digital humanitarianism: practices, epistemologies, and social relations – Takes a critical look at the use of big data in humanitarian spaces, arguing that the advent of digital humanitarianism has profound political and social implications, and can in fact limit information available following a humanitarian crisis.
Kate Crawford – Is Data a Danger to the Developing World? – Argues that it is not simply risks to privacy that data poses to developing countries, but suggests that “data discrimination” can affect even the basic human rights of individuals, and introduce problematic power hierarchies between those who can access data and those who cannot.
Paul Currion – Eyes Wide Shut: The challenge of humanitarian biometrics – Examines the use of biometrics by humanitarian organizations and national governments, and suggests stronger accountability is needed to ensure data from marginalized groups remain protected.
Yves-Alexandre de Montjoye, Jake Kendall and Cameron F. Kerry – Enabling Humanitarian Use of Mobile Phone Data – Analyzes how data from mobile communication can provide insights into the spread of infectious disease, and how such data can also compromise individual privacy.
Michael F. Goodchild and Alan Glennon – Crowdsourcing geographic information for disaster response: a research frontier – Explores how though volunteered geographic data may be messy and unreliable, it can provide many benefits in emergency situations.
Raphael Horler – Crowdsourcing in the Humanitarian Network – An Analysis of the Literature – A Bachelor thesis which explores the increasing use of crowdsourced data by organizations involved in disaster response, investigating some of the challenges such use of crowdsourcing poses.
Gus Hosein and Carly Nyst – Aiding Surveillance – Suggests that the unregulated use of technologies and surveillance systems by humanitarian organizations create systems which pose serious threats to individuals’ rights, particularly their right to privacy.
L. Jacobsen – The Politics of Humanitarian Technology: Good Intentions, Unintended Consequences and Insecurity – Raises concerns about the rise of data collection and digital technology in humanitarian aid organizations, arguing that its unquestioned prominence creates new structures of power and control, which remain hidden under the rubric of liberal humanitarianism.
Mirca Madianou – Digital Inequality and Second-Order Disasters: Social Media in the Typhoon Haiyan Recovery – Taking the effects of Typhoon Haiyan as a key case study, this paper investigates how digital inequalities and an unequal access to data can exacerbate existing social inequalities in a post-disaster environment.
Sean Martin McDonald – Ebola: A Big Data Disaster. Privacy, Property, and the Law of Disaster Experimentation – Analyzes the challenges and privacy risks of using unregulated data in public health coordination by taking the use of Call Detail Record (CDR) data during the Ebola crisis as a key case study.
National Academy of Engineering – Sensing and Shaping Emerging Conflicts: Report of a Joint Workshop of the National Academy of Engineering and the United States Institute of Peace: Roundtable on Technology, Science, and Peacebuilding – Building on the overview report of the United States Institute of Peace workshop examines what opportunities new technologies and data sharing provides for humanitarian groups.
Mary K.Pratt – Big Data’s role in humanitarian aid – A Computer World article which provides an overview of Big Data, and how it is improving the efficiency and efficacy of humanitarian response, especially in conflict zones.
Bertrand Taithe Róisínand and Roger Mac Ginty – Data hubris? Humanitarian information systems and the mirage of technology – Specifically looks at visual technology and crisis mapping, and big data, and suggests that there exists an over-enthusiasm in these claims made on behalf of technologically advanced humanitarian information systems.
Linnet Taylor – No place to hide? The ethics and analytics of tracking mobility using mobile phone data – Examines the ethical problems associated with the tracking of mobile phone data, especially in low or middle-income countries.
UN Office for the Coordination of Humanitarian Affairs (UN-OCHA) – Big data and humanitarianism: 5 things you need to know – Briefly outlines five issues that face humanitarian organizations as they integrate big data into their operations.
United Nations Global Pulse – Mapping the Risk-Utility Landscape of Mobile Data for Sustainable Development and Humanitarian Action – Reports on a Global Pulse project (done in partnership with Massachusetts Institute of Technology) which aimed to find how aggregated mobile data can be maximized to protect privacy and provide effective support to crisis response.
The Wilson Center – Connecting Grassroots to Government for Disaster Management: Workshop Summary – Summarizes the key points drawn from a two day Wilson Center workshop, which investigated how new technologies could engage whole communities in disaster management.

* Thanks to: Kristen B. Sandvik; Zara Rahman; Jennifer Schulte; Sean McDonald; Paul Currion; Dinorah Cantú-Pedraza and the Responsible Data Listserve for valuable input.

Elements of a New Ethical Framework for Big Data Research

Curated on April 2, 2016August 3, 2018 by Stefaan Verhulst

“The Berkman Center is pleased to announce the publication of a new paper from the Privacy Tools for Sharing Research Data project team. In this paper, Effy Vayena, Urs Gasser, Alexandra Wood, and David O’Brien from the Berkman Center, with Micah Altman from MIT Libraries, outline elements of a new ethical framework for big data research.

Emerging large-scale data sources hold tremendous potential for new scientific research into human biology, behaviors, and relationships. At the same time, big data research presents privacy and ethical challenges that the current regulatory framework is ill-suited to address. In light of the immense value of large-scale research data, the central question moving forward is not whether such data should be made available for research, but rather how the benefits can be captured in a way that respects fundamental principles of ethics and privacy.

The authors argue that a framework with the following elements would support big data utilization and help harness the value of big data in a sustainable and trust-building manner:

Oversight should aim to provide universal coverage of human subjects research, regardless of funding source, across all stages of the information lifecycle.
New definitions and standards should be developed based on a modern understanding of privacy science and the expectations of research subjects.
Researchers and review boards should be encouraged to incorporate systematic risk-benefit assessments and new procedural and technological solutions from the wide range of interventions that are available.
Oversight mechanisms and the safeguards implemented should be tailored to the intended uses, benefits, threats, harms, and vulnerabilities associated with a specific research activity.

Development of a new ethical framework with these elements should be the product of a dynamic multistakeholder process that is designed to capture the latest scientific understanding of privacy, analytical methods, available safeguards, community and social norms, and best practices for research ethics as they evolve over time.

The full paper is available for download through the Washington and Lee Law Review Online as part of a collection of papers featured at the Future of Privacy Forum workshop Beyond IRBs: Designing Ethical Review Processes for Big Data Research held on December 10, 2015, in Washington, DC….(More)”