Paper by Jacob Metcalf and Kate Crawford: “There are growing discontinuities between the research practices of data science and established tools of research ethics regulation. Some of the core commitments of existing research ethics regulations, such as the distinction between research and practice, cannot be cleanly exported from biomedical research to data science research. These discontinuities have led some data science practitioners and researchers to move toward rejecting ethics regulations outright. These shifts occur at the same time as a proposal for major revisions to the Common Rule — the primary regulation governing human-subjects research in the U.S. — is under consideration for the first time in decades. We contextualize these revisions in long-running complaints about regulation of social science research, and argue data science should be understood as continuous with social sciences in this regard. The proposed regulations are more flexible and scalable to the methods of non-biomedical research, but they problematically exclude many data science methods from human-subjects regulation, particularly uses of public datasets. The ethical frameworks for big data research are highly contested and in flux, and the potential harms of data science research are unpredictable. We examine several contentious cases of research harms in data science, including the 2014 Facebook emotional contagion study and the 2016 use of geographical data techniques to identify the pseudonymous artist Banksy. To address disputes about human-subjects research ethics in data science,critical data studies should offer a historically nuanced theory of “data subjectivity” responsive to the epistemic methods, harms and benefits of data science and commerce….(More)”
Using Tweets and Posts to Speed Up Organ Donation
David Bornstein in the New York Times: “…But there is a problem: Demand for organ transplants vastly outstrips supply, as my colleague Tina Rosenberg has reported. In 2015 in the United States, there were only about 9,000 deceased donors (each of whom can save up to eight lives) and 6,000 living donors (who most often donate a kidney or liver lobe). Today, more than 121,000 people are on waiting lists, roughly 100,000 for kidney transplants, 15,000 for livers, and 4,000 for hearts. And the lists keep getting longer — 3,000 people are added to the kidney list each month. Last year, more than 4,000 people died while waiting for a new kidney; 3,600 dropped off the waiting list because they became too sick to qualify for a transplant.
Although 95 percent of Americans support organ donation, fewer than half of American adults are registered as donors. Research suggests that the number who donate organs after death could be increased greatly. Moreover, surveys indicate untapped support for living donation, too; nearly one in four people have told pollsters they would be willing to donate a kidney to save the life of a friend, community member or stranger. “If one in 10,000 Americans decided to donate each year, there wouldn’t be a shortage,” said Josh Morrison, who donated a kidney to a stranger and founded WaitList Zero, an organization that works to increase living kidney donation.
What could be done to harness people’s generous impulses more effectively to save lives?
One group attacking the question is Organize, which was founded in 2014 by Rick Segal’s son Greg, and Jenna Arnold, a media producer and educator who has worked with MTV and the United Nations in engaging audiences in social issues. Organize uses technology, open data and insights from behavioral economics to simplify becoming an organ donor.
This approach is shaking up longstanding assumptions.
For example, in the last four decades, people have most often been asked to register as an organ donor as part of renewing or obtaining a driver’s license. This made sense in the 1970s, when the nation’s organ procurement system was being set up, says Blair Sadler, the former president and chief executive of Rady Children’s Hospital in San Diego. He helped draft theUniform Anatomical Gift Act in 1967, which established a national legal framework for organ donation. “Health care leaders were asking, ‘How do we make this more routine?’” he recalled. “It’s hard to get people to put it in their wills. Oh, there’s a place where people have to go every five years” — their state Department of Motor Vehicles.
Today, governments allow individuals to initiate registrations online, but the process can be cumbersome. For example, New York State required me to fill out a digital form on my computer, then print it out and mail it to Albany. Donate Life America, by contrast, allows individuals to register online as an organ donor just by logging in with email or a Facebook or Google account — much easier.
In practice, legal registration may be overemphasized. It may be just as important to simply make your wishes known to your loved ones. When people tell relatives, “If something happens to me, I want to be an organ donor,” families almost always respect their wishes. This is particularly important for minors, who cannot legally register as donors.
Using that insight, Organize is making it easier to conduct social media campaigns to both prompt and collect sentiments about organ donation from Facebook, Twitter and Instagram.
If you post or tweet about organ donation, or include a hashtag like #iwanttobeanorgandonor, #organdonor, #donatemyparts, or any of a number of other relevant terms, Organize captures the information and logs it in a registry. In a year, it has gathered the names of nearly 600,000 people who declare support for organ donation. Now the big question is: Will it actually increase organ donation rates?
We should begin getting an idea pretty soon. Organize has been working with the Nevada Donor Network to test its registry. And in the coming months, several other states will begin using it….(More)”
Regulatory Transformations: An Introduction
Chapter by Bettina Lange and Fiona Haines in the book Regulatory Transformations: “Regulation is no longer the prerogative of either states or markets. Increasingly citizens in association with businesses catalyse regulation which marks the rise of a social sphere in regulation. Around the world, in San Francisco, Melbourne, Munich and Mexico City, citizens have sought to transform how and to what end economic transactions are conducted. For instance, ‘carrot mob’ initiatives use positive economic incentives, not provided by a state legal system, but by a collective of civil society actors in order to change business behaviour. In contrast to ‘negative’ consumer boycotts, ‘carrotmob’ events use ‘buycotts’. They harness competition between businesses as the lever for changing how and for what purpose business transactions are conducted. Through new social media ‘carrotmobs’ mobilize groups of citizens to purchase goods at a particular time in a specific shop. The business that promises to spend the greatest percentage of its takings on, for instance, environmental improvements, such as switching to a supplier of renewable energy, will be selected for an organized shopping spree and financially benefit from the extra income it receives from the ‘carrot mob’ event.’Carrot mob’ campaigns chime with other fundamental challenges to conventional economic activity, such as the shared use of consumer goods through citizens collective consumption which questions traditional conceptions of private property….(More; Other Chapters)”
OSoMe: The IUNI observatory on social media
Clayton A Davis et al at Peer J. PrePrint: “The study of social phenomena is becoming increasingly reliant on big data from online social networks. Broad access to social media data, however, requires software development skills that not all researchers possess. Here we present the IUNI Observatory on Social Media, an open analytics platform designed to facilitate computational social science. The system leverages a historical, ongoing collection of over 70 billion public messages from Twitter. We illustrate a number of interactive open-source tools to retrieve, visualize, and analyze derived data from this collection. The Observatory, now available at osome.iuni.iu.edu, is the result of a large, six-year collaborative effort coordinated by the Indiana University Network Science Institute.”…(More)”
Citizens breaking out of filter bubbles: Urban screens as civic media
Conference Paper by Satchell, Christine et al :”Social media platforms risk polarising public opinions by employing proprietary algorithms that produce filter bubbles and echo chambers. As a result, the ability of citizens and communities to engage in robust debate in the public sphere is diminished. In response, this paper highlights the capacity of urban interfaces, such as pervasive displays, to counteract this trend by exposing citizens to the socio-cultural diversity of the city. Engagement with different ideas, networks and communities is crucial to both innovation and the functioning of democracy. We discuss examples of urban interfaces designed to play a key role in fostering this engagement. Based on an analysis of works empirically-grounded in field observations and design research, we call for a theoretical framework that positions pervasive displays and other urban interfaces as civic media. We argue that when designed for more than wayfinding, advertisement or television broadcasts, urban screens as civic media can rectify some of the pitfalls of social media by allowing the polarised user to break out of their filter bubble and embrace the cultural diversity and richness of the city….(More)”
Ethical Reasoning in Big Data
Book edited by Collmann, Jeff, and Matei, Sorin Adam: “This book springs from a multidisciplinary, multi-organizational, and multi-sector conversation about the privacy and ethical implications of research in human affairs using big data. The need to cultivate and enlist the public’s trust in the abilities of particular scientists and scientific institutions constitutes one of this book’s major themes. The advent of the Internet, the mass digitization of research information, and social media brought about, among many other things, the ability to harvest – sometimes implicitly – a wealth of human genomic, biological, behavioral, economic, political, and social data for the purposes of scientific research as well as commerce, government affairs, and social interaction. What type of ethical dilemmas did such changes generate? How should scientists collect, manipulate, and disseminate this information? The effects of this revolution and its ethical implications are wide-ranging.
This book includes the opinions of myriad investigators, practitioners, and stakeholders in big data on human beings who also routinely reflect on the privacy and ethical issues of this phenomenon. Dedicated to the practice of ethical reasoning and reflection in action, the book offers a range of observations, lessons learned, reasoning tools, and suggestions for institutional practice to promote responsible big data research on human affairs. It caters to a broad audience of educators, researchers, and practitioners. Educators can use the volume in courses related to big data handling and processing. Researchers can use it for designing new methods of collecting, processing, and disseminating big data, whether in raw form or as analysis results. Lastly, practitioners can use it to steer future tools or procedures for handling big data. As this topic represents an area of great interest that still remains largely undeveloped, this book is sure to attract significant interest by filling an obvious gap in currently available literature. …(More)”
Mexico City is crowdsourcing its new constitution using Change.org in a democracy experiment
Ana Campoy at Quartz: “Mexico City just launched a massive experiment in digital democracy. It is asking its nearly 9 million residents to help draft a new constitution through social media. The crowdsourcing exercise is unprecedented in Mexico—and pretty much everywhere else.
as locals are known, can petition for issues to be included in the constitution through Change.org (link inSpanish), and make their case in person if they gather more than 10,000 signatures. They can also annotate proposals by the constitution drafters via PubPub, an editing platform (Spanish) similar to GoogleDocs.
The idea, in the words of the mayor, Miguel Angel Mancera, is to“bestow the constitution project (Spanish) with a democratic,progressive, inclusive, civic and plural character.”
There’s a big catch, however. The constitutional assembly—the body that has the final word on the new city’s basic law—is under no obligation to consider any of the citizen input. And then there are the practical difficulties of collecting and summarizing the myriad of views dispersed throughout one of the world’s largest cities.
That makes Mexico City’s public-consultation experiment a big test for the people’s digital power, one being watched around the world.Fittingly, the idea of crowdsourcing a constitution came about in response to an attempt to limit people power.
Fittingly, the idea of crowdsourcing a constitution came about in response to an attempt to limit people power.
For decades, city officials had fought to get out from under the thumb of the federal government, which had the final word on decisions such as who should be the city’s chief of police. This year, finally, they won a legal change that turns the Distrito Federal (federal district), similar to the US’s District of Columbia, into Ciudad de México (Mexico City), a more autonomous entity, more akin to a state. (Confusingly, it’s just part of the larger urban area also colloquially known as Mexico City, which spills into neighboring states.)
However, trying to retain some control, the Mexican congress decided that only 60% of the delegates to the city’s constitutional assembly would be elected by popular vote. The rest will be assigned by the president, congress, and Mancera, the mayor. Mancera is also the only one who can submit a draft constitution to the assembly.
Mancera’s response was to create a committee of some 30 citizens(Spanish), including politicians, human-rights advocates, journalists,and even a Paralympic gold medalist, to write his draft. He also calledfor the development of mechanisms to gather citizens’ “aspirations,values, and longing for freedom and justice” so they can beincorporated into the final document.
The mechanisms, embedded in an online platform (Spanish) that offersvarious ways to weigh in, were launched at the end of March and willcollect inputs until September 1. The drafting group has until themiddle of that month to file its text with the assembly, which has toapprove the new constitution by the end of January.
An experiment with few precedents
Mexico City didn’t have a lot of examples to draw on, since not a lot ofplaces have experience with crowdsourcing laws. In the US, a few locallawmakers have used Wiki pages and GitHub to draft bills, says MarilynBautista, a lecturer at Stanford Law School who has researched thepractice. Iceland—with a population some 27 times smaller than MexicoCity’s—famously had its citizens contribute to its constitution withinput from social media. The effort failed after the new constitution gotstuck in parliament.
In Mexico City, where many citizens already feel left out, the first bighurdle is to convince them it’s worth participating….
Then comes the task of making sense of the cacophony that will likelyemerge. Some of the input can be very easily organized—the results ofthe survey, for example, are being graphed in real time. But there could be thousands of documents and comments on the Change.org petitionsand the editing platform.
Ideas are grouped into 18 topics, such as direct democracy,transparency and economic rights. They are prioritized based on theamount of support they’ve garnered and how relevant they are, saidBernardo Rivera, an adviser for the city. Drafters get a weekly deliveryof summarized citizen petitions….
The most elaborate part of the system is PubPub, an open publishing platform similar to Google Docs, which is based on a project originally developed by MIT’s Media Lab. The drafters are supposed to post essays on how to address constitutional issues, and potentially, the constitution draft itself, once there is one. Only they—or whoever they authorize—will be able to reword the original document.
User comments and edits are recorded on a side panel, with links to the portion of text they refer to. Another screen records every change, so everyone can track which suggestions have made it into the text. Members of the public can also vote comments up or down, or post their own essays….(More).
The “Social Side” of Public Policy: Monitoring Online Public Opinion and Its Mobilization During the Policy Cycle
Andrea Ceron and Fedra Negri in Policy & Internet: “This article addresses the potential role played by social media analysis in promoting interaction between politicians, bureaucrats, and citizens. We show that in a “Big Data” world, the comments posted online by social media users can profitably be used to extract meaningful information, which can support the action of policymakers along the policy cycle. We analyze Twitter data through the technique of Supervised Aggregated Sentiment Analysis. We develop two case studies related to the “jobs act” labor market reform and the “#labuonascuola” school reform, both formulated and implemented by the Italian Renzi cabinet in 2014–15. Our results demonstrate that social media data can help policymakers to rate the available policy alternatives according to citizens’ preferences during the formulation phase of a public policy; can help them to monitor citizens’ opinions during the implementation phase; and capture stakeholders’ mobilization and de-mobilization processes. We argue that, although social media analysis cannot replace other research methods, it provides a fast and cheap stream of information that can supplement traditional analyses, enhancing responsiveness and institutional learning….(More)”
How to See Gentrification Coming
Nathan Collins at Pacific Standard: “Depending on whom you ask, gentrification is either damaging, not so bad, or maybe even good for the low-income people who live in what we euphemistically call up-and-coming neighborhoods. Either way, it’d be nice for everybody to know which neighborhoods are going to get revitalized/eviscerated next. Now, computer scientists think they’ve found a way to do exactly that: Using Twitter and Foursquare, map the places visited by the most socially diverse crowds. Those, it turns out, are the most likely to gentrify.
Led by University of Cambridge graduate student Desislava Hristova, the researchers began their study by mapping out the social network of 37,722 Londoners who posted Foursquare check-ins via Twitter. Two people were presumed to be friends—connected on the social network—if they followed each other’s Twitter feeds. Next, Hristova and her colleagues built a geographical network of 42,080 restaurants, clubs, shops, apartments, and so on. Quaint though it may seem, the researchers treated two places as neighbors in the geographical network if they were, in fact, physically near each other. The team then linked the social and geographical networks using 549,797 Foursquare check-ins, each of which ties a person in the social network to a place in the geographical one.
Gentrification doesn’t start when outsiders move in; it starts when outsiders come to visit.
Using the network data, the team next constructed several measures of the social diversity of places, each of which helps distinguish between places that bring together friends versus strangers, and to distinguish between spots that attract socially diverse crowds versus a steady group of regulars. Among other things, those measures showed that places in the outer boroughs of London brought together more socially homogenous groups of people—in terms of their Foursquare check-ins, at least—compared with boroughs closer to the core.
But the real question is what social diversity has to do with gentrification. To measure that, the team used the United Kingdom’s Index of Multiple Deprivation, which takes into account income, education, environmental factors such as air quality, and more to quantify the socioeconomic state of affairs in localities across the U.K., including each of London’s 32 boroughs.
The rough pattern, according to the analysis: The most socially diverse places in London were also the most deprived. This is about the opposite of what you’d expect, based on social networks studied in isolation from geography, which indicates that, generally, the people with the most diverse social networks are the most prosperous….(More)”
Friended, but not Friends: Federal Ethics Authorities Address Role of Social Media in Politics
CRS Reports & Analysis: “Since the rise of social media over the past decade, new platforms of technology have reinforced the adage that the law lags behind developments in technology. Government agencies, officials, and employees regularly use a number of social media options – e.g., Twitter, Facebook, etc. – that have led agencies to update existing ethics rules to reflect the unique issues that they may present. Two areas of ethics regulation affected by the increased role of social media are the ethical standards governing gifts to federal employees and the restrictions on employees’ political activities. These rules apply to employees in the executive branch, though separate ethics rules and guidance on similar topics apply to the House and Senate….(More)”