science

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)”

When open data is a Trojan Horse: The weaponization of transparency in science and governance

Curated on April 1, 2016August 3, 2018 by Stefaan Verhulst

Karen E.C. Levy and David Merritt Johns in Big Data and Society: “Openness and transparency are becoming hallmarks of responsible data practice in science and governance. Concerns about data falsification, erroneous analysis, and misleading presentation of research results have recently strengthened the call for new procedures that ensure public accountability for data-driven decisions. Though we generally count ourselves in favor of increased transparency in data practice, this Commentary highlights a caveat. We suggest that legislative efforts that invoke the language of data transparency can sometimes function as “Trojan Horses” through which other political goals are pursued. Framing these maneuvers in the language of transparency can be strategic, because approaches that emphasize open access to data carry tremendous appeal, particularly in current political and technological contexts. We illustrate our argument through two examples of pro-transparency policy efforts, one historical and one current: industry-backed “sound science” initiatives in the 1990s, and contemporary legislative efforts to open environmental data to public inspection. Rules that exist mainly to impede science-based policy processes weaponize the concept of data transparency. The discussion illustrates that, much as Big Data itself requires critical assessment, the processes and principles that attend it—like transparency—also carry political valence, and, as such, warrant careful analysis….(More)”

How to Win a Science Contest

Curated on March 31, 2016May 29, 2019 by Stefaan Verhulst

Nathan Collins at Pacific Standard: “…there are contests like the DARPA Robotics Challenge, which gives prizes for solving particularly difficult problems, like how to prevent an autonomous vehicle from crashing.

But who wins such contests, and how? One might think it’s the science insiders, since they have the knowledge and background to solve difficult scientific problems. It’s hard to imagine, for example, a political scientist solving a major problem in theoretical physics. At the same time, insiders can become inflexible, having been so ensconced in a particular way of thinking that they can’t see outside of the box, let alone think outside it.

Unfortunately, most of what we know about insiders, outsiders, and scientific success is anecdotal. (Hedy Lamarr, the late actress and co-inventor of a key wireless technology, is a prominent anecdote, but still just an anecdote.) To remedy that, Oguz Ali Acar and Jan van den Ende decided to conduct a proper study. For data, they looked to InnoCentive, an online platform that “crowdsource[s] innovative solutions from the world’s smartest people, who compete to provide ideas and solutions to important business, social, policy, scientific, and technical challenges,” according to its website.

Acar and van den Ende surveyed 230 InnoCentive contest participants, who reported how much expertise they had related to the last problem they’d solved, along with how much experience they had solving similar problems in the past, regardless of whether it was related to their professional expertise. The researchers also asked how many different scientific fields problem solvers had looked to for ideas, and how much effort they’d put into their solutions. For each of the solvers, the researchers then looked at all the contests that person won and computed their odds of winning—a measure of creativity, they argue, since contests are judged in part on the solutions’ creativity.

That data revealed an intuitive, though not entirely simple pattern. Insiders (think Richard Feynman in physics) were more likely to win a contest when they cast a wide net for ideas, while outsiders (like Lamarr) performed best when they focused on one scientific or technological domain. In other words, outsiders—who may bring a useful new perspective to bear—should bone up on the problem they’re trying to solve, while insiders, who’ve already done their homework, benefit from thinking outside the box.

Still, there’s something both groups can’t do without: hard work. “[I]f insiders … spend significant amounts of time seeking out knowledge from a wide variety of other fields, they are more likely to be creative in that domain,” Acar and van den Ende write, and if outsiders work hard, they “can turn their lack of knowledge in a domain into an advantage.”….(More)”

How to stop being so easily manipulated by misleading statistics

Curated on March 30, 2016August 15, 2018 by Stefaan Verhulst

Q&A by Akshat Rathi in Quartz: “There are three kinds of lies: Lies, damned lies, and statistics.” Few people know the struggle of correcting such lies better than David Spiegelhalter. Since 2007, he has been the Winton professor for the public understanding of risk (though he prefers “statistics” to “risk”) at the University of Cambridge.In a sunlit hotel room in Washington DC, Quartz caught up with Spiegelhalter recently to talk about his unique job. The conversation sprawled from the wisdom of eating bacon (would you swallow any other known carcinogen?), to the serious crime of manipulating charts, to the right way to talk about rare but scary diseases.

In a sunlit hotel room in Washington DC, Quartz caught up with Spiegelhalter recently to talk about his unique job. The conversation sprawled from the wisdom of eating bacon (would you swallow any other known carcinogen?), to the serious crime of manipulating charts, to the right way to talk about rare but scary diseases.

When he isn’t fixing people’s misunderstandings of numbers, he works to communicate numbers better so that misunderstandings can be avoided from the beginning. The interview is edited and condensed for clarity….

What’s a recent example of misrepresentation of statistics that drove you bonkers?
I got very grumpy at an official graph of British teenage pregnancy rates that apparently showed they had declined to nearly zero. Until I realized that the bottom part of the axis had been cut off, which made it impossible to visualize the (very impressive) 50% reduction since 2000.You once said graphical representation of data does not always communicate what we think it communicates. What do you mean by that?
Graphs can be as manipulative as words. Using tricks such as cutting axes, rescaling things, changing data from positive to negative, etc. Sometimes putting zero on the y-axis is wrong. So to be sure that you are communicating the right things, you need to evaluate the message that people are taking away. There are no absolute rules. It all depends on what you want to communicate….

Poorly communicated risk can have a severe effect. For instance, the news story about the risk that pregnant women are exposing their unborn child to when they drink alcohol caused stress to one of our news editors who had consumed wine moderately through her pregnancy.

I think it’s irresponsible to say there is a risk when they actually don’t know if there is one. There is scientific uncertainty about that.

“‘Absence of evidence is not evidence of absence.’ I hate that phrase…It’s always used in a manipulative way.” In such situations of unknown risk, there is a phrase that is often used: “Absence of evidence is not evidence of absence.” I hate that phrase. I get so angry when people use that phrase. It’s always used in a manipulative way. I say to them that it’s not evidence of absence, but if you’ve looked hard enough you’ll see that most of the time the evidence shows a very small effect, if at all.

So on the risks of drinking alcohol while being pregnant, the UK’s health authority said that as a precautionary step it’s better not to drink. That’s fair enough. This honesty is important. To say that we don’t definitely know if drinking is harmful, but to be safe we say you shouldn’t. That’s treating people as adults and allowing them to use their own judgement.

Science is a bigger and bigger part of our lives. What is the limitation in science journalism right now and how can we improve it?...(More)

The Function of—and Need for—Institutional Review Boards

Curated on March 29, 2016August 3, 2018 by Stefaan Verhulst

Review by Iain Brassington of The Censor’s Hand: The Misregulation of Human-Subject Research (Carl E. Schneider, The MIT Press): “Scientific research can be a laborious and frustrating process even before it gets started—especially when it involves living human subjects. Universities and other research institutions maintain Institutional Review Boards that scrutinize research proposals and their methodologies, consent and privacy procedures, and so on. Similarly intensive reviews are required when the intention is to use human tissue—if, say, tissue from diagnostic cancer biopsies could potentially be used to gauge the prevalence of some other illness across the population. These procedures can generate absurdities. A doctor who wanted to know which television characters children recognized, for example, was advised to seek ethics committee approval, and told that he needed to do a pilot study as a precursor.

Today’s IRB system is the response to a historic problem: academic researchers’ tendency to behave abominably when left unmonitored. Nazi medical and pseudomedical experiments provide an obvious and well-known reference, but such horrors are not found only in totalitarian regimes. The Tuskegee syphilis study, for example, deliberately left black men untreated over the course of decades so researchers could study the natural course of the disease. On a much smaller but equally disturbing scale is the case of Dan Markingson, a 26-year-old University of Michigan graduate. Suffering from psychotic illness, Markingson was coercively enrolled in a study of antipsychotics to which he could not consent, and concerns about his deteriorating condition were ignored. In 2004, he was found dead, having almost decapitated himself with a box cutter.

Many thoughtful ethicists are aware of the imperfections of IRBs. They have worried publicly for some time that the IRB system, or parts of it, may claim an authority with which even many bioethicists are uncomfortable, and hinder science for no particularly good reason. Does the system need re-tuning, a total re-build, or something even more drastic?

When it comes to IRBs, Carl E. Schneider, a professor of law and internal medicine at the University of Michigan, belongs to the abolitionist camp. In The Censor’s Hand: The Misregulation of Human-Subject Research, he presents the case against the IRB system plainly. It is a case that rests on seven related charges.

IRBs, Schneider posits, cannot be shown to do good, with regulators able to produce “no direct evidence that IRBs prevented harm”; that an IRB at least went through the motions of reviewing the trial in which Markingson died might be cited as evidence of this. On top of that, he claims, IRBs sometimes cause harm, at least insofar as they slow down medical innovation. They are built to err on the side of caution, since “research on humans” can cover a vast range of activities and disciplines, and they struggle to take this range into proper account. Correspondingly, they “lack a legible and convincing ethics”; the autonomy of IRBs means that they come to different decisions on identical cases. (In one case, an IRB thought that providing supplemental vitamin A in a study was so dangerous that it should not be allowed; another thought that withholding it in the same study was so dangerous that it should not be allowed.) IRBs have unrealistically high expectations of their members, who are often fairly ad hoc groupings with no obvious relevant expertise. They overemphasize informed consent, with the unintended consequence that cramming every possible eventuality into a consent form makes it utterly incomprehensible. Finally, Schneider argues, IRBs corrode free expression by restricting what researchers can do and how they can do it….(More)”

Innovation Prizes in Practice and Theory

Curated on March 24, 2016October 23, 2018 by Stefaan Verhulst

Paper by Michael J. Burstein and Fiona Murray: “Innovation prizes in reality are significantly different from innovation prizes in theory. The former are familiar from popular accounts of historical prizes like the Longitude Prize: the government offers a set amount for a solution to a known problem, like £20,000 for a method of calculating longitude at sea. The latter are modeled as compensation to inventors in return for donating their inventions to the public domain. Neither the economic literature nor the policy literature that led to the 2010 America COMPETES Reauthorization Act — which made prizes a prominent tool of government innovation policy — provides a satisfying justification for the use of prizes, nor does either literature address their operation. In this article, we address both of these problems. We use a case study of one canonical, high profile innovation prize — the Progressive Insurance Automotive X Prize — to explain how prizes function as institutional means to achieve exogenously defined innovation policy goals in the face of significant uncertainty and information asymmetries. Focusing on the structure and function of actual innovation prizes as an empirical matter enables us to make three theoretical contributions to the current understanding of prizes. First, we offer a stronger normative justification for prizes grounded in their status as a key institutional arrangement for solving a specified innovation problem. Second, we develop a model of innovation prize governance and then situate that model in the administrative state, as a species of “new governance” or “experimental” regulation. Third, we derive from those analyses a novel framework for choosing among prizes, patents, and grants, one in which the ultimate choice depends on a trade off between the efficacy and scalability of the institutional solution….(More)”

Big data, meet behavioral science

Curated on March 14, 2016August 3, 2018 by Stefaan Verhulst

Ben Castleman at Brookings: “America’s community colleges offer the promise of a more affordable pathway to a bachelor’s degree. Students can pay substantially less for the first two years of college, transfer to a four-year college or university, and still earn their diploma in the same amount of time. At least in theory. Most community college students—80 percent of them—enter with the intention to transfer, but only 20 percent actually do so within five years of entering college. This divide represents a classic case of what behavioralists call an intention-action gap.

Why would so many students who enter community colleges intending to transfer fail to actually do so? Put yourself in the shoes of a 20-something community college student. You’ve worked hard for the past couple years, earning credits and paying a lot less in tuition than you would have if you had enrolled immediately in a four-year college or university. But now you want to transfer, so that you can complete your bachelor’s degree. How do you figure out where to go? Ideally you’d probably like to find a college that would take most of your credits, where you’re likely to graduate from, and where the degree is going to count for something in the labor market. A college advisor could probably help you figure this out,but at many community colleges there are at least 1,000 other students assigned to your advisor, so you might have a hard time getting a quality meeting. Some states have articulation agreements between two- and four-year institutions that guarantee admission for students who complete certain course sequences and perform at a high enough level. But these agreements are often dense and inaccessible.

The combination of big data and behavioral insights has the potential to help students navigate these complex decisions and successfully follow through on their intentions. Big data analytic techniques allow us to identify concrete transfer pathways where students are positioned to succeed; behavioral insights ensure we communicate these options in a way that maximizes students’ engagement and responsiveness…..A growing body of innovative research has demonstrated that, by applying behavioral science insights to the way we communicate with students and families about the opportunities and resources available to them, we can help people navigate these complex decisions and experience better outcomes as a result. A combination of simplified information, reminders, and access to assistance have improved achievement and attainment up and down the education pipeline, nudging parents to practice early-literacy activities with their kids or check in with their high schoolers about missed assignments, andencouraging students to renew their financial aid for college….

These types of big data techniques are already being used in some education sectors. For instance, a growing number of colleges use predictive analytics to identify struggling students who need additional assistance, so faculty and administrators can intervene before the student drops out. But frequently there is insufficient attention, once the results of these predictive analyses are in hand, about how to communicate the information in a way that is likely to lead to behavior change among students or educators. And much of the predictive analytics work has been on the side of plugging leaks in the pipeline (e.g. preventing drop-outs from higher education), rather than on the side of proactively sending students and families personalized information about educational and career pathways where they are likely to flourish…(More)”

Accelerating Discovery with New Tools and Methods for Next Generation Social Science

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

DARPA: “The explosive growth of global digital connectivity has opened new possibilities for designing and conducting social science research. Once limited by practical constraints to experiments involving just a few dozen participants—often university students or other easily available groups—or to correlational studies of large datasets without any opportunity for determining causation, scientists can now engage thousands of diverse volunteers online and explore an expanded range of important topics and questions. If new tools and methods for harnessing virtual or alternate reality and massively distributed platforms could be developed and objectively validated, many of today’s most important and vexing challenges in social science—such as identifying the primary drivers of social cooperation, instability and resilience—might be made more tractable, with benefits for domains as broad as national security, public health, and economics.

To begin to assess the research opportunities provided by today’s web-connected world and advanced technologies, DARPA today launched its Next Generation Social Science (NGS2) program. The program aims to build and evaluate new methods and tools to advance rigorous, reproducible social science studies at scales necessary to develop and validate causal models of human social behaviors. The program will draw upon and build across a wide array of disciplines—including social sciences like sociology, economics, political science, anthropology, and psychology, as well as information and computer sciences, physics, biology and math.

As an initial focus, NGS2 will challenge researchers to develop and use these new tools and methods to identify causal mechanisms of “collective identity” formation—how a group of individuals becomes a unified whole, and how under certain circumstances that community breaks down into a chaotic mix of disconnected individuals.

“Social science has done a remarkable job of helping us understand ourselves as the highly social creatures we are, but the field has long acknowledged and rued some frustrating research limitations, including technical and logistical limits to experimentally studying large, representative populations and the challenges of replicating key studies to better understand the limits of our knowledge,” said Adam Russell, DARPA program manager. “As a result, it’s been difficult for social scientists to determine what variables matter most in explaining their observations of human social systems and to move from documenting correlation to identifying causation.”

On top of those methodological and analytic limitations, Russell said, the field is inherently challenged because of its subject matter: human beings, with all their complex variability and seeming unpredictability. “Physicists have joked about how much more difficult their field would be if atoms or electrons had personalities, but that’s exactly the situation faced by social scientists,” he said.

By developing and applying new methods and models to larger, more diverse, and more representative groups of individuals—such as through web-based global gaming and alternate reality platforms—NGS2 seeks to validate new tools that may empower social science in the same way that sophisticated telescopes and microscopes have helped advance astronomy and biology….(More)”