The DNA Data We Have Is Too White. Scientists Want to Fix That

Curated on Posted on by Stefaan Verhulst

Sarah Elizabeth Richards at Smithsonian: “We live in the age of big DNA data. Scientists are eagerly sequencing millions of human genomes in the hopes of gleaning information that will revolutionize health care as we know it, from targeted cancer therapies to personalized drugs that will work according to your own genetic makeup.

There’s a big problem, however: the data we have is too white. The vast majority of participants in worldwide genomics research are of European descent. This disparity could potentially leave out minorities from benefitting from the windfall of precision medicine. “It’s hard to tailor treatments for people’s unique needs, if the people who are suffering from those diseases aren’t included in the studies,” explains Jacquelyn Taylor, associate professor in nursing who researches health equity at New York University.

That’s about to change with the “All of Us” initiative, an ambitious health research endeavor by the National Institutes of Health that launches in May. Originally created in 2015 under President Obama as the Precision Medicine Initiative, the project aims to collect data from at least 1 million people of all ages, races, sexual identities, income and education levels. Volunteers will be asked to donate their DNA, complete health surveys and wear fitness and blood pressure trackers to offer clues about the interplay of their stats, their genetics and their environment….(More)”.

Examining Civil Society Legitimacy

Curated on Posted on by Stefaan Verhulst

Saskia Brechenmacher and Thomas Carothers at Carnegie Endowment for International Peace: “Civil society is under stress globally as dozens of governments across multiple regions are reducing space for independent civil society organizations, restricting or prohibiting international support for civic groups, and propagating government-controlled nongovernmental organizations. Although civic activists in most places are no strangers to repression, this wave of anti–civil society actions and attitudes is the widest and deepest in decades. It is an integral part of two broader global shifts that raise concerns about the overall health of the international liberal order: the stagnation of democracy worldwide and the rekindling of nationalistic sovereignty, often with authoritarian features.

Attacks on civil society take myriad forms, from legal and regulatory measures to physical harassment, and usually include efforts to delegitimize civil society. Governments engaged in closing civil society spaces not only target specific civic groups but also spread doubt about the legitimacy of the very idea of an autonomous civic sphere that can activate and channel citizens’ interests and demands. These legitimacy attacks typically revolve around four arguments or accusations:

  • That civil society organizations are self-appointed rather than elected, and thus do not represent the popular will. For example, the Hungarian government justified new restrictions on foreign-funded civil society organizations by arguing that “society is represented by the elected governments and elected politicians, and no one voted for a single civil organization.”
  • That civil society organizations receiving foreign funding are accountable to external rather than domestic constituencies, and advance foreign rather than local agendas. In India, for example, the Modi government has denounced foreign-funded environmental NGOs as “anti-national,” echoing similar accusations in Egypt, Macedonia, Romania, Turkey, and elsewhere.
  • That civil society groups are partisan political actors disguised as nonpartisan civic actors: political wolves in citizen sheep’s clothing. Governments denounce both the goals and methods of civic groups as being illegitimately political, and hold up any contacts between civic groups and opposition parties as proof of the accusation.
  • That civil society groups are elite actors who are not representative of the people they claim to represent. Critics point to the foreign education backgrounds, high salaries, and frequent foreign travel of civic activists to portray them as out of touch with the concerns of ordinary citizens and only working to perpetuate their own privileged lifestyle.

Attacks on civil society legitimacy are particularly appealing for populist leaders who draw on their nationalist, majoritarian, and anti-elite positioning to deride civil society groups as foreign, unrepresentative, and elitist. Other leaders borrow from the populist toolbox to boost their negative campaigns against civil society support. The overall aim is clear: to close civil society space, governments seek to exploit and widen existing cleavages between civil society and potential supporters in the population. Rather than engaging with the substantive issues and critiques raised by civil society groups, they draw public attention to the real and alleged shortcomings of civil society actors as channels for citizen grievances and demands.

The widening attacks on the legitimacy of civil society oblige civil society organizations and their supporters to revisit various fundamental questions: What are the sources of legitimacy of civil society? How can civil society organizations strengthen their legitimacy to help them weather government attacks and build strong coalitions to advance their causes? And how can international actors ensure that their support reinforces rather than undermines the legitimacy of local civic activism?

To help us find answers to these questions, we asked civil society activists working in ten countries around the world—from Guatemala to Tunisia and from Kenya to Thailand—to write about their experiences with and responses to legitimacy challenges. Their essays follow here. We conclude with a final section in which we extract and discuss the key themes that emerge from their contributions as well as our own research…

  1. Saskia Brechenmacher and Thomas Carothers, The Legitimacy Landscape
  2. César Rodríguez-Garavito, Objectivity Without Neutrality: Reflections From Colombia
  3. Walter Flores, Legitimacy From Below: Supporting Indigenous Rights in Guatemala
  4. Arthur Larok, Pushing Back: Lessons From Civic Activism in Uganda
  5. Kimani Njogu, Confronting Partisanship and Divisions in Kenya
  6. Youssef Cherif, Delegitimizing Civil Society in Tunisia
  7. Janjira Sombatpoonsiri, The Legitimacy Deficit of Thailand’s Civil Society
  8. Özge Zihnioğlu, Navigating Politics and Polarization in Turkey
  9. Stefánia Kapronczay, Beyond Apathy and Mistrust: Defending Civic Activism in Hungary
  10. Zohra Moosa, On Our Own Behalf: The Legitimacy of Feminist Movements
  11. Nilda Bullain and Douglas Rutzen, All for One, One for All: Protecting Sectoral Legitimacy
  12. Saskia Brechenmacher and Thomas Carothers, The Legitimacy Menu….(More)”.

New Repository of Government Data Visualizations and Maps

Curated on Posted on by Stefaan Verhulst

Press Release: “Data-Smart City Solutions, a program of Harvard Kennedy School’s Ash Center for Democratic Governance and Innovation, today launched a searchable public database comprising cutting-edge examples of public sector data use. The “Solutions Search” indexes interactive maps and visualizations, spanning civic issue areas such as transportation, public health, and housing, that are helping data innovators more accurately understand and illustrate challenges, leading to optimized solutions.

The new user-friendly public database includes 200 data-driven models for civic technologists, community organizations, and government employees. “By showcasing successful data-driven initiatives from across the country, we have the opportunity to help city leaders learn from each other and avoid reinventing the wheel,” noted Stephen Goldsmith, Daniel Paul Professor of the Practice of Government and faculty director of the Innovations in Government Program at the Ash Center, who also leads the Civic Analytics Network, a national network of municipal chief data officers.

This new Harvard database spans city, county, state, and federal levels, and features a wide variety of interventions and initiatives, including maps, data visualizations, and dashboards. Examples include the California Report Card and GradeDC.gov, dashboards that measurecommunity health – and run on citizen input, allowing residents to rank various city services and agencies. Users can also find Redlining Louisville: The History of Race, Class, and Real Estate, a visualization that explores the impact of disinvestment in Louisville neighborhoods….(More)”.

Accountability in modern government: what are the issues?

Curated on Posted on by Stefaan Verhulst

Discussion Paper by Benoit Guerin, Julian McCrae and Marcus Shepheard: “…Accountability lies at the heart of democratic government. It enables people to know how the Government is doing and how to gain redress when things go wrong. It ensures ministers and civil servants are acting in the interests of the people they serve.

Accountability is a part of good governance and it can increase the trustworthiness and legitimacy of the state in the eyes of the public. Every day, 5.4 million public sector workers deliver services ranging from health care to schools to national defence.1 A host of bodies hold them to account – whether the National Audit Office undertaking around 60 value for money inquiries a year,2 Ofsted inspecting more than 5,000 schools per year, or the main Government ombudsman services dealing with nearly 80,000 complaints from the public in 2016/17 alone. More than 21,000 elected officials, ranging from MPs to local councillors, scrutinise these services on behalf of citizens.

When that accountability works properly, it helps the UK’s government to be among the best in the world. For example, public spending is authorised by Parliament and routinely stays within the limits set. The accountability that surrounds this – provided through oversight by the Treasury, audit by the National Audit Office and scrutiny by the Public Accounts Committee – is strong and dates back to the 19th century. However, in areas where that accountability is weak, the risk of failure – whether financial mismanagement, the collapse of services or chronic underperformance – increases. …

There are three factors underpinning the weak accountability that is perpetuating failure. They are: fundamental gaps in accountability in Whitehall; a failure of accountability beyond Whitehall to keep pace with an increasingly complex public sector landscape; and a pervading culture of blame….

This paper suggests potential options for strengthening accountability, based on our analysis. These involve changes to structures, increased transparency and moves to improve the culture. These options are meant to elicit discussion rather than to set the Institute for Government’s position at this stage….(More)”

The digital economy is disrupting our old models

Curated on Posted on by Stefaan Verhulst

Diane Coyle at The Financial Times: “One of the many episodes of culture shock I experienced as a British student in the US came when I first visited the university health centre. They gave me my medical notes to take away. Once I was over the surprise, I concluded this was entirely proper. After all, the true data was me, my body. I was reminded of this moment from the early 1980s when reflecting on the debate about Facebook and data, one of the collective conclusions of which seems to be that personal data are personal property so there need to be stronger rights of ownership. If I do not like what Facebook is doing with my data, I should be able to withdraw them. Yet this fix for the problem is not straightforward.

“My” data are inextricably linked with that of other people, who are in my photographs or in my network. Once the patterns and correlations have been extracted from it, withdrawing my underlying data is neither here nor there, for the value lies in the patterns. The social character of information can be seen from the recent example of Strava accidentally publishing maps of secret American military bases because the aggregated route data revealed all the service personnel were running around the edge of their camps. One or two withdrawals of personal data would have made no difference. To put it in economic jargon, we are in the territory of externalities and public goods. Information once shared cannot be unshared.
The digital economy is one of externalities and public goods to a far greater degree than in the past. We have not begun to get to grips with how to analyse it, still less to develop policies for the common good. There are two questions at the heart of the challenge: what norms and laws about property rights over intangibles such as data or ideas or algorithms are going to be needed? And what will the best balance between collective and individual actions be or, to put it another way, between government and market?
Tussles about rights over intangible or intellectual property have been going on for a while: patent trolls on the one hand, open source creators on the other. However, the issue is far from settled. Do we really want to accept, for example, that John Deere, in selling an expensive tractor to a farmer, is only in fact renting it out because it claims property rights over the installed software?

…

Free digital goods of the open source kind are being cross-subsidised by their creators’ other sources of income. Free digital goods of the social media kind are being funded by various advertising services — and that turns out to be an ugly solution. Yet the network effects are so strong, the benefits they provide so great, that if Facebook and Google were shut down by antitrust action tomorrow, replacement digital groups could well emerge before too long. China seems to be in effect nationalising its big digital platforms but many in the west will find that even less appealing than a private data market. In short, neither “market” nor “state” looks like the right model for ownership and governance in an information economy pervaded by externalities and public goods. Finding alternative models for the creation and sharing of value in the digital world, when these are inherently collective and non-rival activities, is an urgent challenge….(More).

Data in the EU: Commission steps up efforts to increase availability and boost healthcare data sharing

Curated on Posted on by Stefaan Verhulst

PressRelease: “Today, the European Commission is putting forward a set of measures to increase the availability of data in the EU, building on previous initiatives to boost the free flow of non-personal data in the Digital Single Market.

Data-driven innovation is a key enabler of market growth, job creation, particularly for SMEs and startups, and the development of new technologies. It allows citizens to easily access and manage their health data, and allows public authorities to use data better in research, prevention and health system reforms….

Today’s proposals build on the General Data Protection Regulation (GDPR), which will enter into application as of 25 May 2018. They will ensure:

  • Better access to and reusability of public sector data: A revised law on Public Sector Information covers data held by public undertakings in transport and utilities sectors. The new rules limit the exceptions that allow public bodies to charge more than the marginal costs of data dissemination for the reuse of their data. They also facilitate the reusability of open research data resulting from public funding, and oblige Member States to develop open access policies. Finally, the new rules require – where applicable – technical solutions like Application Programming Interfaces (APIs) to provide real-time access to data.
  • Scientific data sharing in 2018: A new set of recommendations address the policy and technological changes since the last Commission proposal on access to and preservation of scientific information. They offer guidance on implementing open access policies in line with open science objectives, research data and data management, the creation of a European Open Science Cloud, and text and data-mining. They also highlight the importance of incentives, rewards, skills and metrics appropriate for the new era of networked research.
  • Private sector data sharing in business-to-business and business-to-governments contexts: A new Communication entitled “Towards a common European data space” provides guidance for businesses operating in the EU on the legal and technical principles that should govern data sharing collaboration in the private sector.
  • Securing citizens’ healthcare data while fostering European cooperation: The Commission is today setting out a plan of action that puts citizens first when it comes to data on citizens’ health: by securing citizens’ access to their health data and introducing the possibility to share their data across borders; by using larger data sets to enable more personalised diagnoses and medical treatment, and better anticipate epidemics; and by promoting appropriate digital tools, allowing public authorities to better use health data for research and for health system reforms. Today’s proposal also covers the interoperability of electronic health records as well as a mechanism for voluntary coordination in sharing data – including genomic data – for disease prevention and research….(More)”.

What Is Human-Centric Design?

Curated on Posted on by Stefaan Verhulst

Zack Quaintance at GovTech: “…Government services, like all services, have historically used some form of design to deploy user-facing components. The design portion of this equation is nothing new. What Olesund says is new, however, is the human-centric component.

“In the past, government services were often designed from the perspective and need of the government institution, not necessarily with the needs or desires of residents or constituents in mind,” said Olesund. “This might lead, for example, to an accumulation of stats and requirements for residents, or utilization of outdated technology because the government institution is locked into a contract.”

Basically, government has never set out to design its services to be clunky or hard to use. These qualities have, however, grown out of the legally complex frameworks that governments must adhere to, which can subsequently result in a failure to prioritize the needs of the people using the services rather than the institution.

Change, however, is underway. Human-centric design is one of the main priorities of the U.S. Digital Service (USDS) and 18F, a pair of organizations created under the Obama administration with missions that largely involve making government services more accessible to the citizenry through efficient use of tech.

Although the needs of state and municipal governments are more localized, the gov tech work done at the federal level by the USDS and 18F has at times served as a benchmark or guidepost for smaller government agencies.

“They both redesign services to make them digital and user-friendly,” Olesund said. “But they also do a lot of work creating frameworks and best practices for other government agencies to adopt in order to achieve some of the broader systemic change.”

One of the most tangible examples of human-centered design at the state or local level can be found at Michigan’s Department of Health and Human Services, which recently worked with the Detroit-based design studio Civillato reduce its paper services application from 40 pages, 18,000-some words and 1,000 questions, down to 18 pages, 3,904 words and 213 questions. Currently, Civilla is working with the nonprofit civic tech group Code for America to help bring the same massive level of human-centered design progress to the state’s digital services.

Other work is underway in San Francisco’s City Hall and within the state of California. A number of cities also have iTeams funded through Bloomberg Philanthropies, and their missions are to innovate in ways that solve ongoing municipal problems, a mission that often requires use of human-centric design….(More)”.

How artificial intelligence is transforming the world

Curated on Posted on by Stefaan Verhulst

Report by Darrell West and John Allen at Brookings: “Most people are not very familiar with the concept of artificial intelligence (AI). As an illustration, when 1,500 senior business leaders in the United States in 2017 were asked about AI, only 17 percent said they were familiar with it. A number of them were not sure what it was or how it would affect their particular companies. They understood there was considerable potential for altering business processes, but were not clear how AI could be deployed within their own organizations.

Despite its widespread lack of familiarity, AI is a technology that is transforming every walk of life. It is a wide-ranging tool that enables people to rethink how we integrate information, analyze data, and use the resulting insights to improve decisionmaking. Our hope through this comprehensive overview is to explain AI to an audience of policymakers, opinion leaders, and interested observers, and demonstrate how AI already is altering the world and raising important questions for society, the economy, and governance.

In this paper, we discuss novel applications in finance, national security, health care, criminal justice, transportation, and smart cities, and address issues such as data access problems, algorithmic bias, AI ethics and transparency, and legal liability for AI decisions. We contrast the regulatory approaches of the U.S. and European Union, and close by making a number of recommendations for getting the most out of AI while still protecting important human values.

In order to maximize AI benefits, we recommend nine steps for going forward:

  • Encourage greater data access for researchers without compromising users’ personal privacy,
  • invest more government funding in unclassified AI research,
  • promote new models of digital education and AI workforce development so employees have the skills needed in the 21st-century economy,
  • create a federal AI advisory committee to make policy recommendations,
  • engage with state and local officials so they enact effective policies,
  • regulate broad AI principles rather than specific algorithms,
  • take bias complaints seriously so AI does not replicate historic injustice, unfairness, or discrimination in data or algorithms,
  • maintain mechanisms for human oversight and control, and
  • penalize malicious AI behavior and promote cybersecurity….(More)

Table of Contents
I. Qualities of artificial intelligence
II. Applications in diverse sectors
III. Policy, regulatory, and ethical issues
IV. Recommendations
V. Conclusion

Using Data to Inform the Science of Broadening Participation

Curated on Posted on by Stefaan Verhulst

Donna K. Ginther at the American Behavioral Scientist: “In this article, I describe how data and econometric methods can be used to study the science of broadening participation. I start by showing that theory can be used to structure the approach to using data to investigate gender and race/ethnicity differences in career outcomes. I also illustrate this process by examining whether women of color who apply for National Institutes of Health research funding are confronted with a double bind where race and gender compound their disadvantage relative to Whites. Although high-quality data are needed for understanding the barriers to broadening participation in science careers, it cannot fully explain why women and underrepresented minorities are less likely to be scientists or have less productive science careers. As researchers, it is important to use all forms of data—quantitative, experimental, and qualitative—to deepen our understanding of the barriers to broadening participation….(More)”.

Austin is piloting blockchain to improve homeless services

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Danny Crichton at TechCrunch: “While the vagaries of the cryptocurrency markets are keeping crypto traders glued to their CoinDesk graphs, the real potential of blockchain is its capability to solve real human challenges in a decentralized, private, and secure way. Government officials have increasingly investigated how blockchain might solve critical problems, but now one city intends to move forward with an actual implementation.

The city of Austin is piloting a new blockchain platform to improve identity services for its homeless population, as part of a competitive grant awarded by the Mayor’s Challenge program sponsored by Bloomberg Philanthropies. Austin was one of 35 cities to be awarded pilot grants, and the top city from that group will ultimately be awarded $5 million….

The city wanted to improve the ability of its patchwork of government and private homeless service providers to offer integrated and comprehensive aid. There are a number of separate challenges here: verifying the identity of a person seeking help, knowing what care that individual has previously received, and empowering the individual to “own” their own records, and ultimately, their destiny.

The goal of the city’s blockchain pilot program is to consolidate the identity and vital records of each homeless person in a safe and confidential way while providing a means for service providers to access that information. Adler explained that “there are all kinds of confidentiality issues that arise when you try to do that, so the thought was that blockchain would allow us to bridge that need.”

By using blockchain, the hope is that the city could replace paper records, which are hard to manage, with electronic encrypted records that would be more reliable and secure. In addition, the blockchain platform could create a decentralized authentication mechanism to verify a particular person’s identity. For instance, a homeless services worker operating in the field could potentially use their mobile device to verify a person live, without having to bring someone back to an office for processing.

More importantly, vital records on the blockchain could build over time, so different providers would know what services a person had used previously. Majid provided the example of health care, where it is crucially important to know the history of an individual. The idea is that, when a homeless person walks into a clinic, the blockchain would provide the entire patient history of that individual to the provider. “Here was your medical records from your last clinic visits, and we can build off the care that you were given last time,” he said. Austin is partnering with the Dell Medical School at the University of Texas to work out how best to implement the blockchain for medical professionals….(More)”.