Startup Offers To Sequence Your Genome Free Of Charge, Then Let You Profit From It

Curated on Posted on by Stefaan Verhulst

Richard Harris at NPR: “A startup genetics company says it’s now offering to sequence your entire genome at no cost to you. In fact, you would own the data and may even be able to make money off it.

Nebula Genomics, created by the prominent Harvard geneticist George Church and his lab colleagues, seeks to upend the usual way genomic information is owned.

Today, companies like 23andMe make some of their money by scanning your genetic patterns and then selling that information to drug companies for use in research. (You choose whether to opt in.)

Church says his new enterprise leaves ownership and control of the data in an individual’s hands. And the genomic analysis Nebula will perform is much more detailed than what 23andMe and similar companies offer.

Nebula will do a full genome sequence, rather than a snapshot of key gene variants. That wider range of genetic information would makes the data more appealing to biologists and biotech and pharmaceutical companies….

Church’s approach is part of a trend that’s pushing back against the multibillion-dollar industry to buy and sell medical information. Right now, companies reap those profits and control the data.

“Patients should have the right to decide for themselves whether they want to share their medical data, and, if so, with whom,” Adam Tanner, at Harvard’s Institute for Quantitative Social Science, says in an email. “Efforts to empower people to fine-tune the fate of their medical information are a step in the right direction.” Tanner, author of a book on the subject of the trade in medical data, isn’t involved in Nebula.

The current system is “very paternalistic,” Church says. He aims to give people complete control over who gets access to their data, and let individuals decide whether or not to sell the information, and to whom.

“In this case, everything is private information, stored on your computer or a computer you designate,” Church says. It can be encrypted so nobody can read it, even you, if that’s what you want.

Drug companies interested in studying, say, diabetes patients would ask Nebula to identify people in their system who have the disease. Nebula would then identify those individuals by launching an encrypted search of participants.

People who have indicated they’re interested in selling their genetic data to a company would then be given the option of granting access to the information, along with medical data that person has designated.

Other companies are also springing up to help people control — and potentially profit from — their medical data. EncrypGen lets people offer up their genetic data, though customers have to provide their own DNA sequence. Hu-manity.co is also trying to establish a system in which people can sell their medical data to pharmaceutical companies….(More)”.

It’s time to let citizens tackle the wickedest public problems

Curated on Posted on by Stefaan Verhulst

Gabriella Capone at apolitical (a winner of the 2018 Apolitical Young Thought Leaders competition): “Rain ravaged Gdańsk in 2016, taking the lives of two residents and causing millions of euros in damage. Despite its 700-year history of flooding the city was overwhelmed by these especially devastating floods. Also, Gdańsk is one of the European coasts most exposed to rising sea levels. It needed a new approach to avoid similar outcomes for the next, inevitable encounter with this worsening problem.

Bringing in citizens to tackle such a difficult issue was not the obvious course of action. Yet this was the proposal of Dr. Marcin Gerwin, an advocate from a neighbouring town who paved the way for Poland’s first participatory budgeting experience.

Mayor Adamowicz of Gdańsk agreed and, within a year, they welcomed about 60 people to the first Citizens Assembly on flood mitigation. Implemented by Dr. Gerwin and a team of coordinators, the Assembly convened over four Saturdays, heard expert testimony, and devised solutions.

The Assembly was not only deliberative and educational, it was action-oriented. Mayor Adamowicz committed to implement proposals on which 80% or more of participants agreed. The final 16 proposals included the investment of nearly $40 million USD in monitoring systems and infrastructure, subsidies to incentivise individuals to improve water management on their property, and an educational “Do Not Flood” campaign to highlight emergency resources.

It may seem risky to outsource the solving of difficult issues to citizens. Yet, when properly designed, public problem-solving can produce creative resolutions to formidable challenges. Beyond Poland, public problem-solving initiatives in Mexico and the United States are making headway on pervasive issues, from flooding to air pollution, to technology in public spaces.

The GovLab, with support from the Tinker Foundation, is analysing what makes for more successful public problem-solving as part of its City Challenges program. Below, I provide a glimpse into the types of design choices that can amplify the impact of public problem-solving….(More)

Public Attitudes Toward Computer Algorithms

Curated on Posted on by Stefaan Verhulst

Aaron Smith at the Pew Research Center: “Algorithms are all around us, utilizing massive stores of data and complex analytics to make decisions with often significant impacts on humans. They recommend books and movies for us to read and watch, surface news stories they think we might find relevant, estimate the likelihood that a tumor is cancerous and predict whether someone might be a criminal or a worthwhile credit risk. But despite the growing presence of algorithms in many aspects of daily life, a Pew Research Center survey of U.S. adults finds that the public is frequently skeptical of these tools when used in various real-life situations.

This skepticism spans several dimensions. At a broad level, 58% of Americans feel that computer programs will always reflect some level of human bias – although 40% think these programs can be designed in a way that is bias-free. And in various contexts, the public worries that these tools might violate privacy, fail to capture the nuance of complex situations, or simply put the people they are evaluating in an unfair situation. Public perceptions of algorithmic decision-making are also often highly contextual. The survey shows that otherwise similar technologies can be viewed with support or suspicion depending on the circumstances or on the tasks they are assigned to do….

The following are among the major findings.

The public expresses broad concerns about the fairness and acceptability of using computers for decision-making in situations with important real-world consequences

Majorities of Americans find it unacceptable to use algorithms to make decisions with real-world consequences for humans

By and large, the public views these examples of algorithmic decision-making as unfair to the people the computer-based systems are evaluating. Most notably, only around one-third of Americans think that the video job interview and personal finance score algorithms would be fair to job applicants and consumers. When asked directly whether they think the use of these algorithms is acceptable, a majority of the public says that they are not acceptable. Two-thirds of Americans (68%) find the personal finance score algorithm unacceptable, and 67% say the computer-aided video job analysis algorithm is unacceptable….

Attitudes toward algorithmic decision-making can depend heavily on context

Despite the consistencies in some of these responses, the survey also highlights the ways in which Americans’ attitudes toward algorithmic decision-making can depend heavily on the context of those decisions and the characteristics of the people who might be affected….

When it comes to the algorithms that underpin the social media environment, users’ comfort level with sharing their personal information also depends heavily on how and why their data are being used. A 75% majority of social media users say they would be comfortable sharing their data with those sites if it were used to recommend events they might like to attend. But that share falls to just 37% if their data are being used to deliver messages from political campaigns.

Across age groups, social media users are comfortable with their data being used to recommend events - but wary of that data being used for political messaging

In other instances, different types of users offer divergent views about the collection and use of their personal data. For instance, about two-thirds of social media users younger than 50 find it acceptable for social media platforms to use their personal data to recommend connecting with people they might want to know. But that view is shared by fewer than half of users ages 65 and older….(More)”.

Just Giving: Why Philanthropy Is Failing Democracy and How It Can Do Better

Curated on Posted on by Stefaan Verhulst

Book by Rob Reich: “Is philanthropy, by its very nature, a threat to today’s democracy? Though we may laud wealthy individuals who give away their money for society’s benefit, Just Giving shows how such generosity not only isn’t the unassailable good we think it to be but might also undermine democratic values and set back aspirations of justice. Big philanthropy is often an exercise of power, the conversion of private assets into public influence. And it is a form of power that is largely unaccountable, often perpetual, and lavishly tax-advantaged. The affluent—and their foundations—reap vast benefits even as they influence policy without accountability. And small philanthropy, or ordinary charitable giving, can be problematic as well. Charity, it turns out, does surprisingly little to provide for those in need and sometimes worsens inequality.

These outcomes are shaped by the policies that define and structure philanthropy. When, how much, and to whom people give is influenced by laws governing everything from the creation of foundations and nonprofits to generous tax exemptions for donations of money and property. Rob Reich asks: What attitude and what policies should democracies have concerning individuals who give money away for public purposes? Philanthropy currently fails democracy in many ways, but Reich argues that it can be redeemed. Differentiating between individual philanthropy and private foundations, the aims of mass giving should be the decentralization of power in the production of public goods, such as the arts, education, and science. For foundations, the goal should be what Reich terms “discovery,” or long-time-horizon innovations that enhance democratic experimentalism. Philanthropy, when properly structured, can play a crucial role in supporting a strong liberal democracy.

Just Giving investigates the ethical and political dimensions of philanthropy and considers how giving might better support democratic values and promote justice….(More)”

Sidewalk Labs: Privacy in a City Built from the Internet Up

Curated on Posted on by Stefaan Verhulst

Harvard Business School Case Study by Leslie K. John, Mitchell Weiss and Julia Kelley: “By the time Dan Doctoroff, CEO of Sidewalk Labs, began hosting a Reddit “Ask Me Anything” session in January 2018, he had only nine months remaining to convince the people of Toronto, their government representatives, and presumably his parent company Alphabet, Inc., that Sidewalk Labs’ plan to construct “the first truly 21st-century city” on the Canadian city’s waterfront was a sound one. Along with much excitement and optimism, strains of concern had emerged since Doctoroff and partners first announced their intentions for a city “built from the internet up” in Toronto’s Quayside district. As Doctoroff prepared for yet another milestone in a year of planning and community engagement, it was almost certain that of the many questions headed his way, digital privacy would be among them….(More)”.

Building Better Cities with Civic Technology

Curated on Posted on by Stefaan Verhulst

Mapping by Kate Gasporro: “…The field of civic technology is relatively new. There are limited strategies to measure effectiveness of these tools. Scholars and practitioners are eager to communicate benefits, including improved efficiency and transparency. But, platforms and cities are having difficulty measuring the impacts of civic technology on infrastructure delivery. Even though civic technology platforms write case studies and provide anecdotal information to market their tools, this information does not communicate the challenges and failures that local governments face when implementing these new technologies. At the same time, the nascency of such tools means local governments are still trying to understand how to leverage and protect the enormous amount of data that civic technology tools acquire.

By mapping the landscape of civic technology, we can see more clearly how eParticipation is being used to address public service challenges, including infrastructure delivery. Although many scholars and practitioners have created independent categories for eParticipation, these categorization frameworks follow a similar pattern. At one end of the spectrum, eParticipation efforts provide public service information and relevant updates to citizens or allowing citizens to contact their officials in a unidirectional flow of information. At the other end, eParticipation efforts allow for deliberate democracy where citizens share decision-making with local government officials. Of the dozen categorization frameworks we found, we selected the most comprehensive one accepted by practitioners. This framework draws from public participation practices and identifies five categories:

  • eInforming: One-way communication providing online information to citizens (in the form of a website) or to government (via ePetitions)
  • eConsulting: Limited two-way communication where citizens can voice their opinions and provide feedback
  • eInvolving: Two-way communication where citizens go through an online process to capture public concerns
  • eCollaborating: Enhanced two-way communication that allows citizens to develop alternative solutions and identify the preferred solution, but decision making remains the government’s responsibility
  • eEmpowerment: Advanced two-way communication that allows citizens to influence and make decisions as co-producers of policies…

After surveying the civic technology space, we found 24 tools that use eParticipation for infrastructure delivery. We map these technologies according to their intended use phase in infrastructure delivery and type of eParticipation. The horizontal axis divides the space into the different infrastructure delivery phases and the vertical axis shows the five eParticipation categories. Together, we can see how civic technology is attempting to include citizens throughout infrastructure delivery. The majority of the civic technologies available operate as eInforming and eConsulting tools, allowing citizens to provide information to local governments about infrastructure issues. This information is then channeled into the project selection and prioritization process that occurs during the planning phase. A few technologies span multiple infrastructure phases because of their abilities to aggregate many eParticipation technologies to address the functions of each infrastructure phase. Based on this cursory map, we see that there are spaces in the infrastructure delivery process where there are only a few civic technologies. This is often because there are fewer opportunities to influence decision making during the later phases….

eParticipation chart

The field of civic technology is relatively new. There are limited strategies to measure effectiveness of these tools. Scholars and practitioners are eager to communicate benefits, including improved efficiency and transparency. But, platforms and cities are having difficulty measuring the impacts of civic technology on infrastructure delivery. Even though civic technology platforms write case studies and provide anecdotal information to market their tools, this information does not communicate the challenges and failures that local governments face when implementing these new technologies. At the same time, the nascency of such tools means local governments are still trying to understand how to leverage and protect the enormous amount of data that civic technology tools acquire…..(More)”

Artificial Intelligence: Risks to Privacy and Democracy

Curated on Posted on by Stefaan Verhulst

Karl Manheim and Lyric Kaplan at Yale Journal of Law and Technology: “A “Democracy Index” is published annually by the Economist. For 2017, it reported that half of the world’s countries scored lower than the previous year. This included the United States, which was demoted from “full democracy” to “flawed democracy.” The principal factor was “erosion of confidence in government and public institutions.” Interference by Russia and voter manipulation by Cambridge Analytica in the 2016 presidential election played a large part in that public disaffection.

Threats of these kinds will continue, fueled by growing deployment of artificial intelligence (AI) tools to manipulate the preconditions and levers of democracy. Equally destructive is AI’s threat to decisional andinforma-tional privacy. AI is the engine behind Big Data Analytics and the Internet of Things. While conferring some consumer benefit, their principal function at present is to capture personal information, create detailed behavioral profiles and sell us goods and agendas. Privacy, anonymity and autonomy are the main casualties of AI’s ability to manipulate choices in economic and political decisions.

The way forward requires greater attention to these risks at the nation-al level, and attendant regulation. In its absence, technology giants, all of whom are heavily investing in and profiting from AI, will dominate not only the public discourse, but also the future of our core values and democratic institutions….(More)”.

The ‘Gateway Drug to Democracy’

Curated on Posted on by Stefaan Verhulst

Video by Jay Arthur Sterrenberg at The Atlantic: “The fastest way to reveal a nation’s priorities is to take a look at its budget. Where money is allocated, improvements and expansions are made; where costs are cut, institutions and policies wither. In America and other similar democracies, political candidates campaign on budget promises, but it can be difficult to maintain transparency—and enforce accountability—once elected into office.

“Budgets are the essence of what government does,” says a woman at a community meeting in Jay Arthur Sterrenberg’s short documentary, Public Money. “We’re cutting out the rhetoric about budgeting and allowing community members to make direct decisions about money in our community.”

She’s talking about participatory budgeting, an innovative democratic process that has been under way in New York City since 2011. Once a year, citizens in participating council districts across the city propose and vote on how to spend $1 million in their neighborhood.

“It results in better budget decisions,” the New York city council’s website reads, “because who better knows the needs of our community than the people who live there?”

Participatory budgeting was first introduced on a large scale in Porto Alegre, Brazil. “For over 25 years, there have been all kinds of massive improvements in city infrastructure, and especially improved conditions in poorer neighborhoods,” Sterrenberg told The Atlantic. Today, there are more than 1,500 participatory budgets around the world.

Public Money, from Meerkat Media Collective, follows one cycle of the participatory-budget process in Sunset Park, Brooklyn. Residents are tasked with proposing project ideas, such as building a community center in the local library, installing security cameras in the park, and fixing potholes in the streets. Committees workshop, debate, and ultimately vote for their favorite projects, which—once deemed viable by the city government—go to the ballot. A public vote is held, and winning projects are funded.

The film takes an observational approach to what Sterrenberg describes as a “hard-to-explain process that has such potential to overhaul our politics.”…(More)”

Getting Serious About Evidence-Based Public Management

Curated on Posted on by Stefaan Verhulst

Philip Joyce at Governing: “In a column in this space in 2015, the late Paul L. Posner, who was one of the most thoughtful observers of public management and intergovernmental relations of the last half-century, decried the disappearance of report cards of government management. In particular, he issued an appeal for someone to move into the space that had been occupied by the Government Performance Project, the decade-long effort funded by the Pew Charitable Trusts to assess the management of states and large local governments.

If anything, what Posner advocated is needed even more today. In an era in which the call for evidence-based decision-making is ubiquitous in government, we have been lacking any real analysis, or even description, of what states and local governments are doing. A couple of recent notable efforts, however, have moved to partially fill this void at the state level.

First, a 2017 report by Pew and the MacArthur Foundation looked across the states at ways in which evidence-based policymaking was used in human services. The study looked at six types of actions that could be undertaken by states and identified states that were engaging, in some way, across four specific policy areas (behavioral health, child welfare, criminal justice and juvenile justice): defining levels of evidence (40 states); inventorying existing programs (50); comparing costs and benefits at a program level (17); reporting outcomes in the budget (42); targeting funds to evidence-based programs (50); and requiring action through state law (34)….

The second notable effort is an ongoing study of the use of data and evidence in the states that was launched recently by the National Association of State Budget Officers (NASBO). Previously, no one had attempted to summarize and categorize all of the initiatives – including those with their impetus in both laws and executive orders — underway across the 50 states. NASBO’s inventory of “Statewide Initiatives to Advance the Use of Data & Evidence for Decision-Making” is part of a set of resources aimed at providing state officials and other interested parties with a summary demonstrating the breadth of these initiatives.

The resulting “living” inventory, which is updated as additional practices are discovered, categorizes these state efforts into five types, listing a total of 90 as of this writing: data analytics (13 initiatives in 9 states), evidence-based policymaking (12 initiatives in 10 states), performance budgeting (18 initiatives in 16 states), performance management (27 initiatives in 24 states) and process improvement (20 initiatives in 19 states).

NASBO acknowledges that it is difficult to draw a bright line between these categories and classifies the initiatives according to the one that appears to be the most dominant. Nevertheless, this inventory provides a very useful catalogue of what states report they are doing, with links to further resources that make it a valuable resource for those considering launching similar initiatives….(More)”.

Declaration of Cities Coalition for Digital Rights

Curated on Posted on by Stefaan Verhulst

New York City, Barcelona and Amsterdam: “We, the undersigned cities, formally come together to form the Cities Coalition for Digital Rights, to protect and uphold human rights on the internet at the local and global level.

The internet has become inseparable from our daily lives. Yet, every day, there are new cases of digital rights abuse, misuse and misinformation and concentration of power around the world: freedom of expression being censored; personal information, including our movements and communications, monitored, being shared and sold without consent; ‘black box’ algorithms being used to make unaccountable decisions; social media being used as a tool of harassment and hate speech; and democratic processes and public opinion being undermined.

As cities, the closest democratic institutions to the people, we are committed to eliminating impediments to harnessing technological opportunities that improve the lives of our constituents, and to providing trustworthy and secure digital services and infrastructures that support our communities. We strongly believe that human rights principles such as privacy, freedom of expression, and democracy must be incorporated by design into digital platforms starting with locally-controlled digital infrastructures and services.

As a coalition, and with the support of the United Nations Human Settlements Program (UN-Habitat), we will share best practices, learn from each other’s challenges and successes, and coordinate common initiatives and actions. Inspired by the Internet Rights and Principles Coalition (IRPC), the work of 300 international stakeholders over the past ten years, we are committed to the following five evolving principles:

01.Universal and equal access to the internet, and digital literacy

02.Privacy, data protection and security

03.Transparency, accountability, and non-discrimination of data, content and algorithms

04.Participatory Democracy, diversity and inclusion

05.Open and ethical digital service standards”