Social licence for health data

Curated on Posted on by Stefaan Verhulst

Evidence Brief by NSW Government: “Social licence, otherwise referred to as social licence to operate, refers to an approval or consensus from the society members or the community for the users, either as a public or private enterprise or individual, to use their health data as desired or accepted under certain conditions. Social licence is a dynamic and fluid concept and is subject to change over time often influenced by societal and contextual factors.
The social licence is usually indicated through ongoing engagement and negotiations with the public and is not a contract with strict terms and conditions. It is, rather, a moral and ethical responsibility assumed by the data users based on trust and legitimacy, It supplements the techno-legal mechanisms to regulate the use of data.
For example, through public engagement, certain values and principles can emerge as pertinent to public support for using their data. Similarly, the public may view certain activities relating to their data use as acceptable and beneficial, implying their permission for certain activities or usecase scenarios. Internationally, although not always explicitly referred to as a social licence, the most common approach to establishing public trust and support and identifying common grounds or agreements on acceptable practices for use of data is through public engagement. Engagement methods and mechanisms for gaining public perspectives vary across countries (Table 1).
− Canada – Health Data Research Network Canada reports on social licence for uses of health data, based on deliberative discussions with 20 experienced public and patient advisors. The output is a list of agreements and disagreements on what uses and users of health data have social licence.
− New Zealand – In 2022, the Ministry of Health commissioned a survey on public perceptions on use of personal health information. This report identified conditions under which the public supports the re-use of their data…(More)”.

Online consent: how much do we need to know?

Curated on Posted on by Stefaan Verhulst

Paper by Bartlomiej Chomanski & Lode Lauwaert: “When you visit a website and click a button that says, ‘I agree to these terms’—do you really agree? Many scholars who consider this question (Solove 2013; Barocas & Nissenbaum 2014; Hull 2015; Pascalev 2017; Yeung 2017; Becker 2019; Zuboff 2019; Andreotta et al. 2022; Wolmarans and Vorhoeve 2022) would tend to answer ‘no’—or, at the very least, they would deem your agreement normatively deficient. The reasoning behind that conclusion is in large part driven by the claim that when most people click ‘I agree’ when visiting online websites and platforms, they do not really know what they are agreeing to. Their lack of knowledge about the privacy policy and other terms of the online agreements thus makes their consent problematic in morally salient ways.

We argue that this prevailing view is wrong. Uninformed consent to online terms and conditions (what we will call, for short, ‘online consent’) is less ethically problematic than many scholars suppose. Indeed, we argue that uninformed online consent preceded by the legitimate exercise of the right not to know (RNTK, to be explained below) is prima facie valid and does not appear normatively deficient in other ways, despite being uninformed.

The paper proceeds as follows. In Sect. 2, we make more precise the concept of online consent and summarize the case against it, as presented in the literature. In Sect. 3 we explain the arguments for the RNTK in bioethics and show that analogous reasoning leads to endorsing the RNTK in online contexts. In Sect. 4, we demonstrate that the appeal to the RNTK helps defuse the critics’ arguments against online consent. Section 5 concludes: online consent is valid (with caveats, to be explored in what follows)…(More)”

Civic Engagement & Policymaking Toolkit

Curated on Posted on by Stefaan Verhulst

About: “This toolkit serves as a guide for science centers and museums and other science engagement organizations to thoughtfully identify and implement ways to nurture civic experiences like these across their work or deepen ongoing civic initiatives for meaningful change within their communities…

This toolkit outlines a Community Science Approach, Civic Engagement & Policymaking, where science and technology are factors in collective civic action and policy decisions to meet community goals. It includes:

  • Guidance for your team on how to get started with this work,
  • An overview of what Civic Engagement & Policymaking as a Community Science Approach can entail,
  • Descriptions of four roles your organization can play to authentically engage with communities on civic priorities,
  • Examples of real collaborations between science engagement organizations and their partners that advance community priorities,
  • Tools, guides, and other resources to help you prepare for new civic engagement efforts and/or expand or deepen existing civic engagement efforts…(More)”.

What AI Can’t Do for Democracy

Curated on Posted on by Stefaan Verhulst

Essay by Daniel Berliner: “In short, there is increasing optimism among both theorists and practitioners over the potential for technology-enabled civic engagement to rejuvenate or deepen democracy. Is this optimism justified?

The answer depends on how we think about what civic engagement can do. Political representatives are often unresponsive to the preferences of ordinary people. Their misperceptions of public needs and preferences are partly to blame, but the sources of democratic dysfunction are much deeper and more structural than information alone. Working to ensure many more “citizens’ voices are truly heard” will thus do little to improve government responsiveness in contexts where the distribution of power means that policymakers have no incentive to do what citizens say. And as some critics have argued, it can even distract from recognizing and remedying other problems, creating a veneer of legitimacy—what health policy expert Sherry Arnstein once famously derided as mere “window dressing.”

Still, there are plenty of cases where contributions from citizens can highlight new problems that need addressing, new perspectives by which issues are understood, and new ideas for solving public problems—from administrative agencies seeking public input to city governments seeking to resolve resident complaints and citizens’ assemblies deliberating on climate policy. But even in these and other contexts, there is reason to doubt AI’s usefulness across the board. The possibilities of AI for civic engagement depend crucially on what exactly it is that policymakers want to learn from the public. For some types of learning, applications of AI can make major contributions to enhance the efficiency and efficacy of information processing. For others, there is no getting around the fundamental needs for human attention and context-specific knowledge in order to adequately make sense of public voices. We need to better understand these differences to avoid wasting resources on tools that might not deliver useful information…(More)”.

Engaging publics in science: a practical typology

Curated on Posted on by Stefaan Verhulst

Paper by Heather Douglas et al: “Public engagement with science has become a prominent area of research and effort for democratizing science. In the fall of 2020, we held an online conference, Public Engagement with Science: Defining and Measuring Success, to address questions of how to do public engagement well. The conference was organized around conceptualizations of the publics engaged, with attendant epistemic, ethical, and political valences. We present here the typology of publics we used (volunteer, representative sample, stakeholder, and community publics), discuss the differences among those publics and what those differences mean for practice, and situate this typology within the existing work on public engagement with science. We then provide an overview of the essays published in this journal arising from the conference which provides a window into the rich work presented at the event…(More)”.

Mini-publics and the public: challenges and opportunities

Curated on Posted on by Stefaan Verhulst

Conversation between Sarah Castell and Stephen Elstub: “…there’s a real problem here: the public are only going to get to know about a mini-public if it gets media coverage, but the media will only cover it if it makes an impact. But it’s more likely to make an impact if the public are aware of it. That’s a tension that mini-publics need to overcome, because it’s important that they reach out to the public. Ultimately it doesn’t matter how inclusive the recruitment is and how well it’s done. It doesn’t matter how well designed the process is. It is still a small number of people involved, so we want mini-publics to be able to influence public opinion and stimulate public debate. And if they can do that, then it’s more likely to affect elite opinion and debate as well, and possibly policy.

One more thing is that, people in power aren’t in the habit of sharing power. And that’s why it’s very difficult. I think the politicians are mainly motivated around this because they hope it’s going to look good to the electorate and get them some votes, but they are also worried about low levels of trust in society and what the ramifications of that might be. But in general, people in power don’t give it away very easily…

Part of the problem is that a lot of the research around public views on deliberative processes was done through experiments. It is useful, but it doesn’t quite tell us what will happen when mini-publics are communicated to the public in the messy real public sphere. Previously, there just weren’t that many well-known cases that we could actually do field research on. But that is starting to change.

There’s also more interdisciplinary work needed in this area. We need to improve how communication strategies around citizens’ assembly are done – there must be work that’s relevant in political communication studies and other fields who have this kind of insight…(More)”.

More-than-human governance experiments in Europe

Curated on Posted on by Stefaan Verhulst

Paper by Claudia Chwalisz & Lucy Reid: “There is a growing network of people and places exploring and practising how governance and policy design can draw on more-than-human intelligences.

‘More-than-human’ was initially coined by David Abram in his 1997 book The Spell of the Sensuous. The term refers to the animate earth and the impossibility of separating our human- ness from our relationship with it. Our exploration related to governance has been around how we might meaningfully consider our relationship with the living world when taking decisions.

We have undertaken a short exploratory research project to learn who is conducting new governance experiments in Europe to begin to map the field, learn from best practices, and share these findings…

There were three main types of approaches to applying the idea of more-than-human governance in practice, sometimes with an overlap:

  • Rights-based;
  • Representation-focused, and 
  • Artistic.

We identified four key groups we felt were missing from our initial research and discussions:

  • Indigenous voices;
  • More non-specialists and artists;
  • A few critical voices, and
  • People using technology in novel ways that reshape our relationship with the living world…(More)”

We Need To Talk About Climate: How Citizens’ Assemblies Can Help Us Solve The Climate Crisis

Curated on Posted on by Stefaan Verhulst

Book by Graham Smith: “Citizens’ assemblies bring the shared wisdom of ordinary people into political decision-making. How might they help us address the climate crisis? The transition to net zero and climate resilient societies requires deep social and economic transformations that will have significant effects on citizens’ lives. Such a transition needs to engage the public directly. Climate assemblies show us how this can be done.

This book explains the variety of climate assemblies that have taken place so far at local, national and international levels and explains why they have captured the imagination of government and activists alike. It examines the different contexts and designs of climate assemblies and assesses their impact. Drawing lessons from current practice, the book demonstrates how assemblies can take us beyond the shortcomings of electoral and partisan politics and how they can have a real and lasting impact on climate policy and politics…(More)”.

Rediscovering the Pleasures of Pluralism: The Potential of Digitally Mediated Civic Participation

Curated on Posted on by Stefaan Verhulst

Essay by Lily L. Tsai and Alex Pentland: “Human society developed when most collective decision-making was limited to small, geographically concentrated groups such as tribes or extended family groups. Discussions about community issues could take place among small numbers of people with similar concerns. As coordination across larger distances evolved, the costs of travel required representatives from each clan or smaller group to participate in deliberations and decision-making involving multiple local communities. Divergence in the interests of representatives and their constituents opened up opportunities for corruption and elite capture.

Technologies now enable very large numbers of people to communicate, coordinate, and make collective decisions on the same platform. We have new opportunities for digitally enabled civic participation and direct democracy that scale for both the smallest and largest groups of people. Quantitative experiments, sometimes including tens of millions of individuals, have examined inclusiveness and efficiency in decision-making via digital networks. Their findings suggest that large networks of nonexperts can make practical, productive decisions and engage in collective action under certain (1) conditions. (2) These conditions include shared knowledge among individuals and communities with similar concerns, and information about their recent actions and outcomes…(More)”

Design Thinking as a Strategic Approach to E-Participation

Curated on Posted on by Stefaan Verhulst

Book by Ilaria Mariani et al: “This open access book examines how the adoption of Design Thinking (DT) can support public organisations in overcoming some of the current barriers in e-participation. Scholars have discussed the adoption of technology to strengthen public engagement through e-participation, streamline and enhance the relationship between government and society, and improve accessibility and effectiveness. However, barriers persist, necessitating further research in this area. By analysing e-participation barriers emerging from the literature and aligning them with notions in the DT literature, this book identifies five core DT practices to enhance e-participation: (i) Meaning creation and sense-making, (ii) Publics formation, (iii) Co-production, (iv) Experimentation and prototyping, and (v) Changing organisational culture. As a result, this book provides insights into enhancing tech-aided public engagement and promoting inclusivity for translating citizen input into tangible service implementations. The book triangulates qualitative analysis of relevant literature in the fields of e-participation and DT with knowledge from European projects experimenting with public participation activities implying experimentation with digital tools. This research aims to bridge the gap between theoretical frameworks and practical application, ultimately contributing to more effective e-participation and digital public services…(More)”.