Responsible data sharing in international health research: a systematic review of principles and norms

Curated on Posted on by Stefaan Verhulst

Paper by Shona Kalkman, Menno Mostert, Christoph Gerlinger, Johannes J. M. van Delden and Ghislaine J. M. W. van Thiel: ” Large-scale linkage of international clinical datasets could lead to unique insights into disease aetiology and facilitate treatment evaluation and drug development. Hereto, multi-stakeholder consortia are currently designing several disease-specific translational research platforms to enable international health data sharing. Despite the recent adoption of the EU General Data Protection Regulation (GDPR), the procedures for how to govern responsible data sharing in such projects are not at all spelled out yet. In search of a first, basic outline of an ethical governance framework, we set out to explore relevant ethical principles and norms…

We observed an abundance of principles and norms with considerable convergence at the aggregate level of four overarching themes: societal benefits and value; distribution of risks, benefits and burdens; respect for individuals and groups; and public trust and engagement. However, at the level of principles and norms we identified substantial variation in the phrasing and level of detail, the number and content of norms considered necessary to protect a principle, and the contextual approaches in which principles and norms are used....

While providing some helpful leads for further work on a coherent governance framework for data sharing, the current collection of principles and norms prompts important questions about how to streamline terminology regarding de-identification and how to harmonise the identified principles and norms into a coherent governance framework that promotes data sharing while securing public trust….(More)”

Opening Internet Monopolies to Competition with Data Sharing Mandates

Curated on Posted on by Stefaan Verhulst

Policy Brief by Claudia Biancotti (PIIE) and Paolo Ciocca (Consob): “Over the past few years, it has become apparent that a small number of technology companies have assembled detailed datasets on the characteristics, preferences, and behavior of billions of individuals. This concentration of data is at the root of a worrying power imbalance between dominant internet firms and the rest of society, reflecting negatively on collective security, consumer rights, and competition. Introducing data sharing mandates, or requirements for market leaders to share user data with other firms and academia, would have a positive effect on competition. As data are a key input for artificial intelligence (AI), more widely available information would help spread the benefits of AI through the economy. On the other hand, data sharing could worsen existing risks to consumer privacy and collective security. Policymakers intending to implement a data sharing mandate should carefully evaluate this tradeoff….(More).

The Politics of Referendum Use in European Democracies

Curated on Posted on by Stefaan Verhulst

Book by Saskia Hollander: “This book demonstrates that the generally assumed dichotomy between referendums and representative democracy does not do justice to the great diversity of referendum types and of how referendums are used in European democracies. Although in all referendums citizens vote directly on issues rather than letting their political representatives do this for them, some referendums are more direct than others.

Rather than reflecting the direct power of the People, most referendums in EU countries are held by, and serve the interests of, the political elites, most notably the executive. The book shows that these interests rarely match the justifications given in the public debate. Instead of being driven by the need to compensate for the deficiency of political parties, decision-makers use referendums primarily to protect the position of their party. In unravelling the strategic role played by national referendums in decision-making, this book makes an unconventional contribution to the debate on the impact of referendums on democracy….(More)”

Does increased ‘participation’ equal a new-found enthusiasm for democracy?

Curated on Posted on by Stefaan Verhulst

Blog by Stephen King and Paige Nicol: “With a few months under our belts, 2019 looks unlikely to be the year of a great global turnaround for democracy. The decade of democratic ‘recession’ that Larry Diamond declared in 2015 has dragged on and deepened, and may now be teetering on the edge of becoming a full-blown depression. 

The start of each calendar year is marked by the release of annual indices, rankings, and reports on how democracy is faring around the world. 2018 reports from Freedom House and the Economist Intelligence Unit (EIU) highlighted precipitous declines in civil liberties in long-standing democracies as well as authoritarian states. Some groups, including migrants, women, ethnic and other minorities, opposition politicians, and journalists have been particularly affected by these setbacks. According to the Committee to Protect Journalists, the number of journalists murdered nearly doubled last year, while the number imprisoned remained above 250 for the third consecutive year. 

Yet, the EIU also found a considerable increase in political participation worldwide. Levels of participation (including voting, protesting, and running for elected office, among other dimensions) increased substantially enough last year to offset falling scores in the other four categories of the index. Based on the methodology used, the rise in political participation was significant enough to prevent a decline in the global overall score for democracy for the first time in three years.

Though this development could give cause for optimism we believe it could also raise new concerns. 

In Zimbabwe, Sudan, and Venezuela we see people who, through desperation and frustration, have taken to the streets – a form of participation which has been met with brutal crackdowns. Time has yet to tell what the ultimate outcome of these protests will be, but it is clear that governments with autocratic tendencies have more – and cheaper – tools to monitor, direct, control, and suppress participation than ever before. 

Elsewhere, we see a danger of people becoming dislocated and disenchanted with democracy, as their representatives fail to take meaningful action on the issues that matter to them. In the UK Parliament, as Brexit discussions have become increasingly polarised and fractured along party political and ideological lines, Foreign Secretary Jeremy Hunt warned that there was a threat of social unrest if Parliament was seen to be frustrating the ‘will of the people.’ 

While we see enhanced participation as crucial to just and fair societies, it alone will not be the silver bullet that saves democracy. Whether this trend becomes a cause for hope or concern will depend on three factors: who is participating, what form does participation take, and how is participation received by those with power?…(More)”.

Advancing Computational Biology and Bioinformatics Research Through Open Innovation Competitions

Curated on Posted on by Stefaan Verhulst

HBR Working Paper by Andrea Blasco et al: “Open data science and algorithm development competitions offer a unique avenue for rapid discovery of better computational strategies. We highlight three examples in computational biology and bioinformatics research where the use of competitions has yielded significant performance gains over established algorithms. These include algorithms for antibody clustering, imputing gene expression data, and querying the Connectivity Map (CMap). Performance gains are evaluated quantitatively using realistic, albeit sanitized, data sets. The solutions produced through these competitions are then examined with respect to their utility and the prospects for implementation in the field. We present the decision process and competition design considerations that lead to these successful outcomes as a model for researchers who want to use competitions and non-domain crowds as collaborators to further their research….(More)”.

Data Can Help Students Maximize Return on Their College Investment

Curated on Posted on by Stefaan Verhulst

Blog by Jennifer Latson for Arnold Ventures: “When you buy a car, you want to know it will get you where you’re going. Before you invest in a certain model, you check its record. How does it do in crash tests? Does it have a history of breaking down? Are other owners glad they bought it?

Students choosing between college programs can’t do the same kind of homework. Much of the detailed data we demand when we buy a car isn’t available for postsecondary education — data such as how many students find jobs in the fields they studied, what they earn, how much debt they accumulate, and how quickly they repay it — yet choosing a college is a much more important financial decision.

The most promising solution to filling in the gaps, according to data advocates, is the College Transparency Act, which would create a secure, comprehensive national data network with information on college costs, graduation rates, and student career paths — and make this data publicly available. The bill, which will be discussed in Congress this year, has broad support from both Republicans and Democrats in the House and the Senate in part because it includes precautions to protect privacy and secure student data….

The data needed to answer questions about student success already exists but is scattered among various agencies and institutions: the Department of Educationfor data on student loan repayment; the Treasury Department for earnings information; and schools themselves for graduation rates.

“We can’t connect the dots to find out how these programs are serving certain students, and that’s because the Department of Education isn’t allowed to connect all the information these places have already collected,” says Amy Laitinen, director for higher education at New America, a think tank collaborating with IHEP to promote educational transparency.
And until recently, publicly available federal postsecondary data only included full-time students who’d never enrolled in a college program before, ignoring the more than half of the higher ed population made up of students who attend school part time or who transfer from one institution to another….(More)”.

Trustworthy Privacy Indicators: Grades, Labels, Certifications and Dashboards

Curated on Posted on by Stefaan Verhulst

Paper by Joel R. Reidenberg et al: “Despite numerous groups’ efforts to score, grade, label, and rate the privacy of websites, apps, and network-connected devices, these attempts at privacy indicators have, thus far, not been widely adopted. Privacy policies, however, remain long, complex, and impractical for consumers. Communicating in some short-hand form, synthesized privacy content is now crucial to empower internet users and provide them more meaningful notice, as well as nudge consumers and data processors toward more meaningful privacy. Indeed, on the basis of these needs, the National Institute of Standards and Technology and the Federal Trade Commission in the United States, as well as lawmakers and policymakers in the European Union, have advocated for the development of privacy indicator systems.

Efforts to develop privacy grades, scores, labels, icons, certifications, seals, and dashboards have wrestled with various deficiencies and obstacles for the wide-scale deployment as meaningful and trustworthy privacy indicators. This paper seeks to identify and explain these deficiencies and obstacles that have hampered past and current attempts. With these lessons, the article then offers criteria that will need to be established in law and policy for trustworthy indicators to be successfully deployed and adopted through technological tools. The lack of standardization prevents user-recognizability and dependability in the online marketplace, diminishes the ability to create automated tools for privacy, and reduces incentives for consumers and industry to invest in a privacy indicators. Flawed methods in selection and weighting of privacy evaluation criteria and issues interpreting language that is often ambiguous and vague jeopardize success and reliability when baked into an indicator of privacy protectiveness or invasiveness. Likewise, indicators fall short when those organizations rating or certifying the privacy practices are not objective, trustworthy, and sustainable.

Nonetheless, trustworthy privacy rating systems that are meaningful, accurate, and adoptable can be developed to assure effective and enduring empowerment of consumers. This paper proposes a framework using examples from prior and current attempts to create privacy indicator systems in order to provide a valuable resource for present-day, real world policymaking….(More)”.

Nudging the dead: How behavioural psychology inspired Nova Scotia’s organ donation scheme

Curated on Posted on by Stefaan Verhulst

Joseph Brean at National Post: “Nova Scotia’s decision to presume people’s consent to donating their organs after death is not just a North American first. It is also the latest example of how deeply behavioural psychology has changed policy debates.

That is a rare achievement for science. Governments used to appeal to people’s sense of reason, religion, civic duty, or fear of consequences. Today, when they want to change how their citizens behave, they use psychological tricks to hack their minds.

Nudge politics, as it came to be known, has been an intellectual hit among wonks and technocrats ever since Daniel Kahneman won the Nobel Prize in 2002 for destroying the belief people make decisions based on good information and reasonable expectations. Not so, he showed. Not even close. Human decision-making is an organic process, all but immune to reason, but strangely susceptible to simple environmental cues, just waiting to be exploited by a clever policymaker….

Organ donation is a natural fit. Nova Scotia’s experiment aims to solve a policy problem by getting people to do what they always tend to do about government requests — nothing.

The cleverness is evident in the N.S. government’s own words, which play on the meaning of “opportunity”: “Every Nova Scotian will have the opportunity to be an organ and tissue donor unless they opt out.” The policy applies to kidneys, pancreas, heart, liver, lungs, small bowel, cornea, sclera, skin, bones, tendons and heart valves.

It is so clever it aims to make progress as people ignore it. The default position is a positive for the policy. It assumes poor pickup. You can opt out of organ donation if you want. Nova Scotia is simply taking the informed gamble that you probably won’t. That is the goal, and it will make for a revealing case study.

Organ donation is an important question, and chronically low donation rates can reasonably be called a crisis. But most people make their personal choice “thoughtlessly,” as Kahneman wrote in the 2011 book Thinking, Fast and Slow.

He referred to European statistics which showed vast differences in organ donation rights between neighbouring and culturally similar countries, such as Sweden and Denmark, or Germany and Austria. The key difference, he noted, was what he called “framing effects,” or how the question was asked….(More)”.

What if You Could Vote for President Like You Rate Uber Drivers?

Curated on Posted on by Stefaan Verhulst

Essay by Guru Madhavan and Charles Phelps: “…Some experimental studies have begun to offer insights into the benefits of making voting methods—and the very goals of voting—more expressive. In the 2007 French presidential election, for instance, people were offered the chance to participate in an experimental ballot that allowed them to use letter grades to evaluate the candidates just as professors evaluate students. This approach, called the “majority judgment,” provides a clear method to combine those grades into rankings or a final winner. But instead of merely selecting a winner, majority judgment conveys—with a greater degree of expressivity—the voters’ evaluations of their choices. In this experiment, people completed their ballots in about a minute, thus allaying potential concerns that a letter grading system was too complicated to use. What’s more, they seemed more enthusiastic about this method. Scholars Michel Balinski and Rida Laraki, who led this study, point out: “Indeed, one of the most effective arguments for persuading reluctant voters to participate was that the majority judgment allows fuller expression of opinion.”

Additional experiments with more expressive ballots have now been repeated across different countries and elections. According to a 2018 summary of these experiments by social choice theorist Annick Laruelle,  “While ranking all candidates appears to be difficult … participants enjoy the possibility of choosing a grade for each candidate … [and] ballots with three grades are preferred to those … with two grades.” Some participant comments are revealing, stating, “With this ballot we can at last vote with the heart,” or, “Voting with this ballot is a relief.” Voters, according to Laruelle, “Enjoyed the option of voting in favor of several candidates and were especially satisfied of being offered the opportunity to vote against candidates.”…

These opportunities for expression might increase public interest in (and engagement with) democratic decision making, encouraging more thoughtful candidate debates, more substantive election campaigns and advertisements, and richer use of opinion polling to help candidates shape their position statements (once they are aware that the public’s selection process has changed). One could even envision that the basis for funding election campaigns might evolve if funders focused on policy ideas rather than political allegiances and specific candidates. Changes such as these would ideally put the power back in the hands of the people, where it actually belongs in a democracy. These conjectures need to be tested and retested across contexts, ideally through field experiments that leverage research and expertise in engineering, social choice, and political and behavioral sciences.

Standard left-to-right political scales and the way we currently vote do not capture the true complexity of our evolving political identities and preferences. If voting is indeed the true instrument of democracy and much more than a repeated political ritual, it must allow for richer expression. Current methods seem to discourage public participation, the very nucleus of civic life. The essence of civility and democracy is not merely about providing issues and options to vote on but in enabling people to fully express their preferences. For a country founded on choice as its tenet, is it too much to ask for a little bit more choice in how we select our leaders? …(More)”.

Understanding algorithmic decision-making: Opportunities and challenges

Curated on Posted on by Stefaan Verhulst

Study by Claude Castelluccia and Daniel Le Métayer for the European Parliament: “While algorithms are hardly a recent invention, they are nevertheless increasingly involved in systems used to support decision-making. These systems, known as ‘ADS’ (algorithmic decision systems), often rely on the analysis of large amounts of personal data to infer correlations or, more generally, to derive information deemed useful to make decisions. Human intervention in the decision-making may vary, and may even be completely out of the loop in entirely automated systems. In many situations, the impact of the decision on people can be significant, such as access to credit, employment, medical treatment, or judicial sentences, among other things.

Entrusting ADS to make or to influence such decisions raises a variety of ethical, political, legal, or technical issues, where great care must be taken to analyse and address them correctly. If they are neglected, the expected benefits of these systems may be negated by a variety of different risks for individuals (discrimination, unfair practices, loss of autonomy, etc.), the economy (unfair practices, limited access to markets, etc.), and society as a whole (manipulation, threat to democracy, etc.).

This study reviews the opportunities and risks related to the use of ADS. It presents policy options to reduce the risks and explain their limitations. We sketch some options to overcome these limitations to be able to benefit from the tremendous possibilities of ADS while limiting the risks related to their use. Beyond providing an up-to date and systematic review of the situation, the study gives a precise definition of a number of key terms and an analysis of their differences to help clarify the debate. The main focus of the study is the technical aspects of ADS. However, to broaden the discussion, other legal, ethical and social dimensions are considered….(More)”.