On the Meaning of Community Consent in a Biorepository Context

Curated on Posted on by Stefaan Verhulst

Article by Astha Kapoor, Samuel Moore, and Megan Doerr: “Biorepositories, vital for medical research, collect and store human biological samples and associated data for future use. However, our reliance solely on the individual consent of data contributors for biorepository data governance is becoming inadequate. Big data analysis focuses on large-scale behaviors and patterns, shifting focus from singular data points to identifying data “journeys” relevant to a collective. The individual becomes a small part of the analysis, with the harms and benefits emanating from the data occurring at an aggregated level.

Community refers to a particular qualitative aspect of a group of people that is not well captured by quantitative measures in biorepositories. This is not an excuse to dodge the question of how to account for communities in a biorepository context; rather, it shows that a framework is needed for defining different types of community that may be approached from a biorepository perspective. 

Engaging with communities in biorepository governance presents several challenges. Moving away from a purely individualized understanding of governance towards a more collectivizing approach necessitates an appreciation of the messiness of group identity, its ephemerality, and the conflicts entailed therein. So while community implies a certain degree of homogeneity (i.e., that all members of a community share something in common), it is important to understand that people can simultaneously consider themselves a member of a community while disagreeing with many of its members, the values the community holds, or the positions for which it advocates. The complex nature of community participation therefore requires proper treatment for it to be useful in a biorepository governance context…(More)”.

Multiple Streams and Policy Ambiguity

Curated on Posted on by Stefaan Verhulst

Book by Rob A. DeLeo, Reimut Zohlnhöfer and Nikolaos Zahariadis: “The last decade has seen a proliferation of research bolstering the theoretical and methodological rigor of the Multiple Streams Framework (MSF), one of the most prolific theories of agenda-setting and policy change. This Element sets out to address some of the most prominent criticisms of the theory, including the lack of empirical research and the inconsistent operationalization of key concepts, by developing the first comprehensive guide for conducting MSF research. It begins by introducing the MSF, including key theoretical constructs and hypotheses. It then presents the most important theoretical extensions of the framework and articulates a series of best practices for operationalizing, measuring, and analyzing MSF concepts. It closes by exploring existing gaps in MSF research and articulating fruitful areas of future research…(More)”.

How Open-Source Software Empowers Nonprofits And The Global Communities They Serve

Curated on Posted on by Stefaan Verhulst

Article by Steve Francis: “One particular area where this challenge is evident is climate. Thousands of nonprofits strive to address the effects of a changing climate and its impact on communities worldwide. Headlines often go to big organizations doing high-profile work (planting trees, for instance) in well-known places. Money goes to large-scale commercial agriculture or new technologies — because that’s where profits are most easily made. But thousands of other communities of small farmers that aren’t as visible or profitable need help too. These communities come together to tackle a number of interrelated problems: climate, soil health and productivity, biodiversity and human health and welfare. They envision a more sustainable future.

The reality is that software is crafted to meet market needs, but these communities don’t represent a profitable market. Every major industry has its own software applications and a network of consultants to tune that software for optimal performance. A farm cooperative in less developed parts of the world seeking to maximize value for sustainably harvested produce faces very different challenges than do any of these business users. Often they need to collect and manipulate data in the field, on whatever mobile device they have, with little or no connectivity. Modern software systems are rarely designed to operate in such an environment; they assume the latest devices and continuous connectivity…(More)”.

May Contain Lies: How Stories, Statistics, and Studies Exploit Our Biases

Curated on Posted on by Stefaan Verhulst

Book by Alex Edmans: “Our lives are minefields of misinformation. It ripples through our social media feeds, our daily headlines, and the pronouncements of politicians, executives, and authors. Stories, statistics, and studies are everywhere, allowing people to find evidence to support whatever position they want. Many of these sources are flawed, yet by playing on our emotions and preying on our biases, they can gain widespread acceptance, warp our views, and distort our decisions.

In this eye-opening book, renowned economist Alex Edmans teaches us how to separate fact from fiction. Using colorful examples—from a wellness guru’s tragic but fabricated backstory to the blunders that led to the Deepwater Horizon disaster to the diet that ensnared millions yet hastened its founder’s death—Edmans highlights the biases that cause us to mistake statements for facts, facts for data, data for evidence, and evidence for proof.

Armed with the knowledge of what to guard against, he then provides a practical guide to combat this tide of misinformation. Going beyond simply checking the facts and explaining individual statistics, Edmans explores the relationships between statistics—the science of cause and effect—ultimately training us to think smarter, sharper, and more critically. May Contain Lies is an essential read for anyone who wants to make better sense of the world and better decisions…(More)”.

Empowered Mini-Publics: A Shortcut or Democratically Legitimate?

Curated on Posted on by Stefaan Verhulst

Paper by Shao Ming Lee: “Contemporary mini-publics involve randomly selected citizens deliberating and eventually tackling thorny issues. Yet, the usage of mini-publics in creating public policy has come under criticism, of which a more persuasive  strand  is  elucidated  by  eminent  philosopher  Cristina  Lafont,  who  argues  that  mini-publics  with  binding  decision-making  powers  (or  ‘empowered  mini-publics’)  are  an  undemocratic  ‘shortcut’  and  deliberative democrats thus cannot use empowered mini-publics for shaping public policies. This paper aims to serve as a nuanced defense of empowered mini-publics against Lafont’s claims. I argue against her  claims  by  explicating  how  participants  of  an  empowered  mini-public  remain  ordinary,  accountable,  and therefore connected to the broader public in a democratically legitimate manner. I further critique Lafont’s own proposals for non-empowered mini-publics and judicial review as failing to satisfy her own criteria for democratic legitimacy in a self-defeating manner and relying on a double standard. In doing so, I show how empowered mini-publics are not only democratic but can thus serve to expand democratic deliberation—a goal Lafont shares but relegates to non-empowered mini-publics…(More)”.

AI for social good: Improving lives and protecting the planet

Curated on Posted on by Stefaan Verhulst

McKinsey Report: “…Challenges in scaling AI for social-good initiatives are persistent and tough. Seventy-two percent of the respondents to our expert survey observed that most efforts to deploy AI for social good to date have focused on research and innovation rather than adoption and scaling. Fifty-five percent of grants for AI research and deployment across the SDGs are $250,000 or smaller, which is consistent with a focus on targeted research or smaller-scale deployment, rather than large-scale expansion. Aside from funding, the biggest barriers to scaling AI continue to be data availability, accessibility, and quality; AI talent availability and accessibility; organizational receptiveness; and change management. More on these topics can be found in the full report.

While overcoming these challenges, organizations should also be aware of strategies to address the range of risks, including inaccurate outputs, biases embedded in the underlying training data, the potential for large-scale misinformation, and malicious influence on politics and personal well-being. As we have noted in multiple recent articles, AI tools and techniques can be misused, even if the tools were originally designed for social good. Experts identified the top risks as impaired fairness, malicious use, and privacy and security concerns, followed by explainability (Exhibit 2). Respondents from not-for-profits expressed relatively more concern about misinformation, talent issues such as job displacement, and effects of AI on economic stability compared with their counterparts at for-profits, who were more often concerned with IP infringement…(More)”

QuantGov

Curated on Posted on by Stefaan Verhulst

About: “QuantGov is an open-source policy analytics platform designed to help create greater understanding and analysis of the breadth of government actions through quantifying policy text. By using the platform, researchers can quickly and effectively retrieve unique data that lies embedded in large bodies of text – data on text complexity, part of speech metrics, topic modeling, etc. …

QuantGov is a tool designed to make policy text more accessible. Think about it in terms of a hyper-powerful Google search that not only finds (1) specified content within massive quantities of text, but (2) also finds patterns and groupings and can even make predictions about what is in a document. Some recent use cases include the following:

  • Analyzing state regulatory codes and predicting which parts of those codes are related to occupational licensing….And predicting which occupation the regulation is talking about….And determining the cost to receive the license.
  • Analyzing Canadian province regulatory code while grouping individual regulations by industry-topic….And determining which Ministers are responsible for those regulations….And determining the complexity of the text for those regulation.
  • Quantifying the number of tariff exclusions that exists due to the Trade Expansion Act of 1962 and recent tariff polices….And determining which products those exclusions target.
  • Comparing the regulatory codes and content of 46 US states, 11 Canadian provinces, and 7 Australian states….While using consistent metrics that can lead to insights that provide legitimate policy improvements…(More)”.

Big Bet Bummer

Curated on Posted on by Stefaan Verhulst

Article by Kevin Starr: “I just got back from Skoll World Forum, the Cannes Festival for those trying to make the world a better place…Amidst the flow of people and ideas, there was one persistent source of turbulence. Literally, within five minutes of my arrival, I was hearing tales of anxiety and exasperation about “Big Bet Philanthropy.” The more people I talked to, the more it felt like the hungover aftermath of a great party: Those who weren’t invited feel left out, while many of those who went are wondering how they’ll get through the day ahead.

When you write startlingly big checks in an atmosphere of chronic scarcity, there are bound to be unintended consequences. Those consequences should guide some iterative party planning on the part of both doers and funders. …big bets bring a whole new level of risk, one borne mostly by the organization. Big bets drive organizations to dramatically accelerate their plans in order to justify a huge (double-your-budget and beyond) infusion of dough. In a funding world that has a tiny number of big bet funders and generally sucks at channeling money to those best able to create change, that puts you at real risk of a momentum and reputation-damaging stall when that big grant runs out…(More)”.

Internet use statistically associated with higher wellbeing

Curated on Posted on by Stefaan Verhulst

Article by Oxford University: “Links between internet adoption and wellbeing are likely to be positive, despite popular concerns to the contrary, according to a major new international study from researchers at the Oxford Internet Institute, part of the University of Oxford.

The study encompassed more than two million participants psychological wellbeing from 2006-2021 across 168 countries, in relation to internet use and psychological well-being across 33,792 different statistical models and subsets of data, 84.9% of associations between internet connectivity and wellbeing were positive and statistically significant. 

The study analysed data from two million individuals aged 15 to 99 in 168 countries, including Latin America, Asia, and Africa and found internet access and use was consistently associated with positive wellbeing.   

Assistant Professor Matti Vuorre, Tilburg University and Research Associate, Oxford Internet Institute and Professor Andrew Przybylski, Oxford Internet Institute carried out the study to assess how technology relates to wellbeing in parts of the world that are rarely studied.

Professor Przybylski said: ‘Whilst internet technologies and platforms and their potential psychological consequences remain debated, research to date has been inconclusive and of limited geographic and demographic scope. The overwhelming majority of studies have focused on the Global North and younger people thereby ignoring the fact that the penetration of the internet has been, and continues to be, a global phenomenon’. 

‘We set out to address this gap by analysing how internet access, mobile internet access and active internet use might predict psychological wellbeing on a global level across the life stages. To our knowledge, no other research has directly grappled with these issues and addressed the worldwide scope of the debate.’ 

The researchers studied eight indicators of well-being: life satisfaction, daily negative and positive experiences, two indices of social well-being, physical wellbeing, community wellbeing and experiences of purpose.   

Commenting on the findings, Professor Vuorre said, “We were surprised to find a positive correlation between well-being and internet use across the majority of the thousands of models we used for our analysis.”

Whilst the associations between internet access and use for the average country was very consistently positive, the researchers did find some variation by gender and wellbeing indicators: The researchers found that 4.9% of associations linking internet use and community well-being were negative, with most of those observed among young women aged 15-24yrs.

Whilst not identified by the researchers as a causal relation, the paper notes that this specific finding is consistent with previous reports of increased cyberbullying and more negative associations between social media use and depressive symptoms among young women. 

Adds Przybylski, ‘Overall we found that average associations were consistent across internet adoption predictors and wellbeing outcomes, with those who had access to or actively used the internet reporting meaningfully greater wellbeing than those who did not’…(More)” See also: A multiverse analysis of the associations between internet use and well-being

Technological Citizenship in Times of Digitization: An Integrative Framework

Curated on Posted on by Stefaan Verhulst

Article by Anne Marte Gardenier, Rinie van Est & Lambèr Royakkers: “This article introduces an integrative framework for technological citizenship, examining the impact of digitization and the active roles of citizens in shaping this impact across the private, social, and public sphere. It outlines the dual nature of digitization, offering opportunities for enhanced connectivity and efficiency while posing challenges to privacy, security, and democratic integrity. Technological citizenship is explored through the lenses of liberal, communitarian, and republican theories, highlighting the active roles of citizens in navigating the opportunities and risks presented by digital technologies across all life spheres. By operationalizing technological citizenship, the article aims to address the gap in existing literature on the active roles of citizens in the governance of digitization. The framework emphasizes empowerment and resilience as crucial capacities for citizens to actively engage with and govern digital technologies. It illuminates citizens’ active participation in shaping the digital landscape, advocating for policies that support their engagement in safeguarding private, social, and public values in the digital age. The study calls for further research into technological citizenship, emphasizing its significance in fostering a more inclusive and equitable digital society…(More)”.