Our personal health history is too valuable to be harvested by the tech giants

Curated on Posted on by Stefaan Verhulst

Eerke Boiten at The Guardian: “…It is clear that the black box society does not only feed on internet surveillance information. Databases collected by public bodies are becoming more and more part of the dark data economy. Last month, it emerged that a data broker in receipt of the UK’s national pupil database had shared its access with gambling companies. This is likely to be the tip of the iceberg; even where initial recipients of shared data might be checked and vetted, it is much harder to oversee who the data is passed on to from there.

Health data, the rich population-wide information held within the NHS, is another such example. Pharmaceutical companies and internet giants have been eyeing the NHS’s extensive databases for commercial exploitation for many years. Google infamously claimed it could save 100,000 lives if only it had free rein with all our health data. If there really is such value hidden in NHS data, do we really want Google to extract it to sell it to us? Google still holds health data that its subsidiary DeepMind Health obtained illegally from the NHS in 2016.

Although many health data-sharing schemes, such as in the NHS’s register of approved data releases], are said to be “anonymised”, this offers a limited guarantee against abuse.

There is just too much information included in health data that points to other aspects of patients’ lives and existence. If recipients of anonymised health data want to use it to re-identify individuals, they will often be able to do so by combining it, for example, with publicly available information. That this would be illegal under UK data protection law is a small consolation as it would be extremely hard to detect.

It is clear that providing access to public organisations’ data for research purposes can serve the greater good and it is unrealistic to expect bodies such as the NHS to keep this all in-house.

However, there are other methods by which to do this, beyond the sharing of anonymised databases. CeLSIUS, for example, a physical facility where researchers can interrogate data under tightly controlled conditions for specific registered purposes, holds UK census information over many years.

These arrangements prevent abuse, such as through deanonymisation, do not have the problem of shared data being passed on to third parties and ensure complete transparency of the use of the data. Online analogues of such set-ups do not yet exist, but that is where the future of safe and transparent access to sensitive data lies….(More)”.

Self-interest and data protection drive the adoption and moral acceptability of big data technologies: A conjoint analysis approach

Curated on Posted on by Stefaan Verhulst

Paper by Rabia I.Kodapanakka, lMark J.Brandt, Christoph Kogler, and Iljavan Beest: “Big data technologies have both benefits and costs which can influence their adoption and moral acceptability. Prior studies look at people’s evaluations in isolation without pitting costs and benefits against each other. We address this limitation with a conjoint experiment (N = 979), using six domains (criminal investigations, crime prevention, citizen scores, healthcare, banking, and employment), where we simultaneously test the relative influence of four factors: the status quo, outcome favorability, data sharing, and data protection on decisions to adopt and perceptions of moral acceptability of the technologies.

We present two key findings. (1) People adopt technologies more often when data is protected and when outcomes are favorable. They place equal or more importance on data protection in all domains except healthcare where outcome favorability has the strongest influence. (2) Data protection is the strongest driver of moral acceptability in all domains except healthcare, where the strongest driver is outcome favorability. Additionally, sharing data lowers preference for all technologies, but has a relatively smaller influence. People do not show a status quo bias in the adoption of technologies. When evaluating moral acceptability, people show a status quo bias but this is driven by the citizen scores domain. Differences across domains arise from differences in magnitude of the effects but the effects are in the same direction. Taken together, these results highlight that people are not always primarily driven by self-interest and do place importance on potential privacy violations. They also challenge the assumption that people generally prefer the status quo….(More)”.

Twitter might have a better read on floods than NOAA

Curated on Posted on by Stefaan Verhulst

Interview by By Justine Calma: “Frustrated tweets led scientists to believe that tidal floods along the East Coast and Gulf Coast of the US are more annoying than official tide gauges suggest. Half a million geotagged tweets showed researchers that people were talking about disruptively high waters even when government gauges hadn’t recorded tide levels high enough to be considered a flood.

Capturing these reactions on social media can help authorities better understand and address the more subtle, insidious ways that climate change is playing out in peoples’ daily lives. Coastal flooding is becoming a bigger problem as sea levels rise, but a study published recently in the journal Nature Communications suggests that officials aren’t doing a great job of recording that.

The Verge spoke with Frances Moore, lead author of the new study and a professor at the University of California, Davis. This isn’t the first time that she’s turned to Twitter for her climate research. Her previous research also found that people tend to stop reacting to unusual weather after dealing with it for a while — sometimes in as little as two years. Similar data from Twitter has been used to study how people coped with earthquakes and hurricanes…(More)”.

NGOs embrace GDPR, but will it be used against them?

Curated on Posted on by Stefaan Verhulst

Report by Vera Franz et al: “When the world’s most comprehensive digital privacy law – the EU General Data Protection Regulation (GDPR) – took effect in May 2018, media and tech experts focused much of their attention on how corporations, who hold massive amounts of data, would be affected by the law.

This focus was understandable, but it left some important questions under-examined–specifically about non-profit organizations that operate in the public’s interest. How would non-governmental organizations (NGOs) be impacted? What does GDPR compliance mean in very practical terms for NGOs? What are the challenges they are facing? Could the GDPR be ‘weaponized’ against NGOs and if so, how? What good compliance practices can be shared among non-profits?

Ben Hayes and Lucy Hannah from Data Protection Support & Management and I have examined these questions in detail and released our findings in this report.

Our key takeaway: GDPR compliance is an integral part of organisational resilience, and it requires resources and attention from NGO leaders, foundations and regulators to defend their organisations against attempts by governments and corporations to misuse the GDPR against them.

In a political climate where human rights and social justice groups are under increasing pressure, GDPR compliance needs to be given the attention it deserves by NGO leaders and funders. Lack of compliance will attract enforcement action by data protection regulators and create opportunities for retaliation by civil society adversaries.

At the same time, since the law came into force, we recognise that some NGOs have over-complied with the law, possibly diverting scarce resources and hampering operations.

For example, during our research, we discovered a small NGO that undertook an advanced and resource-intensive compliance process (a Data Protection Impact Assessment or DPIA) for all processing operations. DPIAs are only required for large-scale and high-risk processing of personal data. Yet this NGO, which holds very limited personal data and undertakes no marketing or outreach activities, engaged in this complex and time-consuming assessment because the organization was under enormous pressure from their government. They told us they “wanted to do everything possible to avoid attracting attention.”…

Our research also found that private companies, individuals and governments who oppose the work of an organisation have used GDPR to try to keep NGOs from publishing their work. To date, NGOs have successfully fought against this misuse of the law….(More)“.

The many perks of using critical consumer user data for social benefit

Curated on Posted on by Stefaan Verhulst

Sushant Kumar at LiveMint: “Business models that thrive on user data have created profitable global technology companies. For comparison, market capitalization of just three tech companies, Google (Alphabet), Facebook and Amazon, combined is higher than the total market capitalization of all listed firms in India. Almost 98% of Facebook’s revenue and 84% of Alphabet’s come from serving targeted advertising powered by data collected from the users. No doubt, these tech companies provide valuable services to consumers. It is also true that profits are concentrated with private corporations and societal value for contributors of data, that is, the user, can be much more significant….

In the existing economic construct, private firms are able to deploy top scientists and sophisticated analytical tools to collect data, derive value and monetize the insights.

Imagine if personalization at this scale was available for more meaningful outcomes, such as for administering personalized treatment for diabetes, recommending crop patterns, optimizing water management and providing access to credit to the unbanked. These socially beneficial applications of data can generate undisputedly massive value.

However, handling critical data with accountability to prevent misuse is a complex and expensive task. What’s more, private sector players do not have any incentives to share the data they collect. These challenges can be resolved by setting up specialized entities that can manage data—collect, analyse, provide insights, manage consent and access rights. These entities would function as a trusted intermediary with public purpose, and may be named “data stewards”….(More)”.

See also: http://datastewards.net/ and https://datacollaboratives.org/

An Algorithm That Grants Freedom, or Takes It Away

Curated on Posted on by Stefaan Verhulst

Cade Metz and Adam Satariano at The New York Times: “…In Philadelphia, an algorithm created by a professor at the University of Pennsylvania has helped dictate the experience of probationers for at least five years.

The algorithm is one of many making decisions about people’s lives in the United States and Europe. Local authorities use so-called predictive algorithms to set police patrols, prison sentences and probation rules. In the Netherlands, an algorithm flagged welfare fraud risks. A British city rates which teenagers are most likely to become criminals.

Nearly every state in America has turned to this new sort of governance algorithm, according to the Electronic Privacy Information Center, a nonprofit dedicated to digital rights. Algorithm Watch, a watchdog in Berlin, has identified similar programs in at least 16 European countries.

As the practice spreads into new places and new parts of government, United Nations investigators, civil rights lawyers, labor unions and community organizers have been pushing back.

They are angered by a growing dependence on automated systems that are taking humans and transparency out of the process. It is often not clear how the systems are making their decisions. Is gender a factor? Age? ZIP code? It’s hard to say, since many states and countries have few rules requiring that algorithm-makers disclose their formulas.

They also worry that the biases — involving race, class and geography — of the people who create the algorithms are being baked into these systems, as ProPublica has reported. In San Jose, Calif., where an algorithm is used during arraignment hearings, an organization called Silicon Valley De-Bug interviews the family of each defendant, takes this personal information to each hearing and shares it with defenders as a kind of counterbalance to algorithms.

Two community organizers, the Media Mobilizing Project in Philadelphia and MediaJustice in Oakland, Calif., recently compiled a nationwide database of prediction algorithms. And Community Justice Exchange, a national organization that supports community organizers, is distributing a 50-page guide that advises organizers on how to confront the use of algorithms.

The algorithms are supposed to reduce the burden on understaffed agencies, cut government costs and — ideally — remove human bias. Opponents say governments haven’t shown much interest in learning what it means to take humans out of the decision making. A recent United Nations report warned that governments risked “stumbling zombie-like into a digital-welfare dystopia.”…(More)”.

Reconsidering Policy: Complexity, Governance and the State

Curated on Posted on by Stefaan Verhulst

Book by Kate Crowley, Jenny Stewart, Adrian Kay and Brian Head: “For nation-states, the contexts for developing and implementing policy have become more complex and demanding. Yet policy studies have not fully responded to the challenges and opportunities represented by these developments. Governance literature has drawn attention to a globalising and network-based policy world, but politics and the role of the state have been de-emphasised.

This book addresses this imbalance by reconsidering traditional policy-analytic concepts, and re-developing and extending new ones, in a melded approach defined as systemic institutionalism. This links policy with governance and the state and suggests how real-world issues might be substantively addressed….(More)”.

Transparent Lobbying and Democracy

Curated on Posted on by Stefaan Verhulst

Book by Šárka Laboutková, Vít Šimral and Petr Vymětal: “This book deals with the current, as yet unsolved, problem of transparency of lobbying. In the current theories and prevalent models that deal with lobbying activities, there is no reflection of the degree of transparency of lobbying, mainly due to the unclear distinction between corruption, lobbying in general, and transparent lobbying. This book provides a perspective on transparency in lobbying in a comprehensive and structured manner. It delivers an interdisciplinary approach to the topic and creates a methodology for assessing the transparency of lobbying, its role in the democratization process and a methodology for evaluating the main consequences of transparency. The new approach is applied to assess lobbying regulations in the countries of Central Eastern Europe and shows a method for how lobbying in other regions of the world may also be assessed….(More)”.

Federal Agencies Use Cellphone Location Data for Immigration Enforcement

Curated on Posted on by Stefaan Verhulst

Byron Tau and Michelle Hackman at the Wall Street Journal: “The Trump administration has bought access to a commercial database that maps the movements of millions of cellphones in America and is using it for immigration and border enforcement, according to people familiar with the matter and documents reviewed by The Wall Street Journal.

The location data is drawn from ordinary cellphone apps, including those for games, weather and e-commerce, for which the user has granted permission to log the phone’s location.

The Department of Homeland Security has used the information to detect undocumented immigrants and others who may be entering the U.S. unlawfully, according to these people and documents.

U.S. Immigration and Customs Enforcement, a division of DHS, has used the data to help identify immigrants who were later arrested, these people said. U.S. Customs and Border Protection, another agency under DHS, uses the information to look for cellphone activity in unusual places, such as remote stretches of desert that straddle the Mexican border, the people said.

The federal government’s use of such data for law enforcement purposes hasn’t previously been reported.

Experts say the information amounts to one of the largest known troves of bulk data being deployed by law enforcement in the U.S.—and that the use appears to be on firm legal footing because the government buys access to it from a commercial vendor, just as a private company could, though its use hasn’t been tested in court.

“This is a classic situation where creeping commercial surveillance in the private sector is now bleeding directly over into government,” said Alan Butler, general counsel of the Electronic Privacy Information Center, a think tank that pushes for stronger privacy laws.

According to federal spending contracts, a division of DHS that creates experimental products began buying location data in 2017 from Venntel Inc. of Herndon, Va., a small company that shares several executives and patents with Gravy Analytics, a major player in the mobile-advertising world.

In 2018, ICE bought $190,000 worth of Venntel licenses. Last September, CBP bought $1.1 million in licenses for three kinds of software, including Venntel subscriptions for location data. 

The Department of Homeland Security and its components acknowledged buying access to the data, but wouldn’t discuss details about how they are using it in law-enforcement operations. People familiar with some of the efforts say it is used to generate investigative leads about possible illegal border crossings and for detecting or tracking migrant groups.

CBP has said it has privacy protections and limits on how it uses the location information. The agency says that it accesses only a small amount of the location data and that the data it does use is anonymized to protect the privacy of Americans….(More)”

If China valued free speech, there would be no coronavirus crisis

Curated on Posted on by Stefaan Verhulst

Verna Yu in The Guardian: “…Despite the flourishing of social media, information is more tightly controlled in China than ever. In 2013, an internal Communist party edict known as Document No 9 ordered cadres to tackle seven supposedly subversive influences on society. These included western-inspired notions of press freedom, “universal values” of human rights, civil rights and civic participation. Even within the Communist party, cadres are threatened with disciplinary action for expressing opinions that differ from the leadership.

Compared with 17 years ago, Chinese citizens enjoy even fewer rights of speech and expression. A few days after 34-year-old Li posted a note in his medical school alumni social media group on 30 December, stating that seven workers from a local live-animal market had been diagnosed with an illness similar to Sars and were quarantined in his hospital, he was summoned by police. He was made to sign a humiliating statement saying he understood if he “stayed stubborn and failed to repent and continue illegal activities, (he) will be disciplined by the law”….

Unless Chinese citizens’ freedom of speech and other basic rights are respected, such crises will only happen again. With a more globalised world, the magnitude may become even greater – the death toll from the coronavirus outbreak is already comparable to the total Sars death toll.

Human rights in China may appear to have little to do with the rest of the world but as we have seen in this crisis, disaster could occur when China thwarts the freedoms of its citizens. Surely it is time the international community takes this issue more seriously….(More)”.