To Bot or Not to Bot? How AI Companions Are Reshaping Human Services and Connection


Essay by Julia Freeland Fisher: “Last year, a Harvard study on chatbots drew a startling conclusion: AI companions significantly reduce loneliness. The researchers found that “synthetic conversation partners,” or bots engineered to be caring and friendly, curbed loneliness on par with interacting with a fellow human. The study was silent, however, on the irony behind these findings: synthetic interaction is not a real, lasting connection. Should the price of curing loneliness really be more isolation?

Missing that subtext is emblematic of our times. Near-term upsides often overshadow long-term consequences. Even with important lessons learned about the harms of social media and big tech over the past two decades, today, optimism about AI’s potential is soaring, at least in some circles.

Bots present an especially tempting fix to long-standing capacity constraints across education, health care, and other social services. AI coaches, tutors, navigators, caseworkers, and assistants could overcome the very real challenges—like cost, recruitment, training, and retention—that have made access to vital forms of high-quality human support perennially hard to scale.

But scaling bots that simulate human support presents new risks. What happens if, across a wide range of “human” services, we trade access to more services for fewer human connections?…(More)”.

Overcoming challenges associated with broad sharing of human genomic data


Paper by Jonathan E. LoTempio Jr & Jonathan D. Moreno: “Since the Human Genome Project, the consensus position in genomics has been that data should be shared widely to achieve the greatest societal benefit. This position relies on imprecise definitions of the concept of ‘broad data sharing’. Accordingly, the implementation of data sharing varies among landmark genomic studies. In this Perspective, we identify definitions of broad that have been used interchangeably, despite their distinct implications. We further offer a framework with clarified concepts for genomic data sharing and probe six examples in genomics that produced public data. Finally, we articulate three challenges. First, we explore the need to reinterpret the limits of general research use data. Second, we consider the governance of public data deposition from extant samples. Third, we ask whether, in light of changing concepts of broad, participants should be encouraged to share their status as participants publicly or not. Each of these challenges is followed with recommendations…(More)”.

Data sharing restrictions are hampering precision health in the European Union


Paper by Cristina Legido-Quigley et al: “Contemporary healthcare is undergoing a transition, shifting from a population-based approach to personalized medicine on an individual level. In October 2023, the European Partnership for Personalized Medicine was officially launched to communicate the benefits of this approach to citizens and healthcare systems in member countries. The main debate revolves around the inconsistency in regulatory changes within personal data access and its potential commercialization. Moreover, the lack of unified consensus within European Union (EU) countries is leading to problems with data sharing to progress personalized medicine. Here we discuss the integration of biological data with personal information on a European scale for the advancement of personalized medicine, raising legal considerations of data protection under the EU General Data Protection Regulation (GDPR)…(More)”.

Digitalizing sewage: The politics of producing, sharing, and operationalizing data from wastewater-based surveillance


Paper by Josie Wittmer, Carolyn Prouse, and Mohammed Rafi Arefin: “Expanded during the COVID-19 pandemic, Wastewater-Based Surveillance (WBS) is now heralded by scientists and policy makers alike as the future of monitoring and governing urban health. The expansion of WBS reflects larger neoliberal governance trends whereby digitalizing states increasingly rely on producing big data as a ‘best practice’ to surveil various aspects of everyday life. With a focus on three South Asian cities, our paper investigates the transnational pathways through which WBS data is produced, made known, and operationalized in ‘evidence-based’ decision-making in a time of crisis. We argue that in South Asia, wastewater surveillance data is actively produced through fragile but power-laden networks of transnational and local knowledge, funding, and practices. Using mixed qualitative methods, we found these networks produced artifacts like dashboards to communicate data to the public in ways that enabled claims to objectivity, ethical interventions, and transparency. Interrogating these representations, we demonstrate how these artifacts open up messy spaces of translation that trouble linear notions of objective data informing accountable, transparent, and evidence-based decision-making for diverse urban actors. By thinking through the production of precarious biosurveillance infrastructures, we respond to calls for more robust ethical and legal frameworks for the field and suggest that the fragility of WBS infrastructures has important implications for the long-term trajectories of urban public health governance in the global South…(More)”

Survey of attitudes in a Danish public towards reuse of health data


Paper by Lea Skovgaard et al: “Everyday clinical care generates vast amounts of digital data. A broad range of actors are interested in reusing these data for various purposes. Such reuse of health data could support medical research, healthcare planning, technological innovation, and lead to increased financial revenue. Yet, reuse also raises questions about what data subjects think about the use of health data for various different purposes. Based on a survey with 1071 respondents conducted in 2021 in Denmark, this article explores attitudes to health data reuse. Denmark is renowned for its advanced integration of data infrastructures, facilitating data reuse. This is therefore a relevant setting from which to explore public attitudes to reuse, both as authorities around the globe are currently working to facilitate data reuse opportunities, and in the light of the recent agreement on the establishment in 2024 of the European Health Data Space (EHDS) within the European Union (EU). Our study suggests that there are certain forms of health data reuse—namely transnational data sharing, commercial involvement, and use of data as national economic assets—which risk undermining public support for health data reuse. However, some of the purposes that the EHDS is supposed to facilitate are these three controversial purposes. Failure to address these public concerns could well challenge the long-term legitimacy and sustainability of the data infrastructures currently under construction…(More)”

Distorted insights from human mobility data


Paper by Riccardo Gallotti, Davide Maniscalco, Marc Barthelemy & Manlio De Domenico: “The description of human mobility is at the core of many fundamental applications ranging from urbanism and transportation to epidemics containment. Data about human movements, once scarce, is now widely available thanks to new sources such as phone call detail records, GPS devices, or Smartphone apps. Nevertheless, it is still common to rely on a single dataset by implicitly assuming that the statistical properties observed are robust regardless of data gathering and processing techniques. Here, we test this assumption on a broad scale by comparing human mobility datasets obtained from 7 different data-sources, tracing 500+ millions individuals in 145 countries. We report wide quantifiable differences in the resulting mobility networks and in the displacement distribution. These variations impact processes taking place on these networks like epidemic spreading. Our results point to the need for disclosing the data processing and, overall, to follow good practices to ensure robust and reproducible results…(More)”

Citizen science as an instrument for women’s health research


Paper by Sarah Ahannach et al: “Women’s health research is receiving increasing attention globally, but considerable knowledge gaps remain. Across many fields of research, active involvement of citizens in science has emerged as a promising strategy to help align scientific research with societal needs. Citizen science offers researchers the opportunity for large-scale sampling and data acquisition while engaging the public in a co-creative approach that solicits their input on study aims, research design, data gathering and analysis. Here, we argue that citizen science has the potential to generate new data and insights that advance women’s health. Based on our experience with the international Isala project, which used a citizen-science approach to study the female microbiome and its influence on health, we address key challenges and lessons for generating a holistic, community-centered approach to women’s health research. We advocate for interdisciplinary collaborations to fully leverage citizen science in women’s health toward a more inclusive research landscape that amplifies underrepresented voices, challenges taboos around intimate health topics and prioritizes women’s involvement in shaping health research agendas…(More)”.

Social licence for health data


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)”.

Privacy during pandemics: Attitudes to public use of personal data


Paper by Eleonora Freddi and Ole Christian Wasenden: “In this paper we investigate people’s attitudes to privacy and sharing of personal data when used to help society combat a contagious disease, such as COVID-19. Through a two-wave survey, we investigate the role of personal characteristics, and the effect of information, in shaping privacy attitudes. By conducting the survey in Norway and Sweden, which adopted very different strategies to handle the COVID-19 pandemic, we analyze potential differences in privacy attitudes due to policy changes. We find that privacy concern is negatively correlated with allowing public use of personal data. Trust in the entity collecting data and collectivist preferences are positively correlated with this type of data usage. Providing more information about the public benefit of sharing personal data makes respondents more positive to the use of their data, while providing additional information about the costs associated with data sharing does not change attitudes. The analysis suggests that stating a clear purpose and benefit for the data collection makes respondents more positive about sharing. Despite very different policy approaches, we do not find any major differences in privacy attitudes between Norway and Sweden. Findings are also similar between the two survey waves, suggesting a minor role for contextual changes…(More)”

Uniting the UK’s Health Data: A Huge Opportunity for Society’


The Sudlow Review (UK): “…Surveys show that people in the UK overwhelmingly support the use of their health data with appropriate safeguards to improve lives. One of the review’s recommendations calls for continued engagement with patients, the public, and healthcare professionals to drive forward developments in health data research.

The review also features several examples of harnessing health data for public benefit in the UK, such as the national response to the COVID-19 pandemic. But successes like these are few and far between due to complex systems and governance. The review reveals that:

  • Access to datasets is difficult or slow, often taking months or even years.
  • Data is accessible for analysis and research related to COVID-19, but not to tackle other health conditions, such as other infectious diseases, cancer, heart disease, stroke, diabetes and dementia.
  • More complex types of health data generally don’t have national data systems (for example, most lab testing data and radiology imaging).
  • Barriers like these can delay or prevent hundreds of studies, holding back progress that could improve lives…

The Sudlow Review’s recommendations provide a pathway to establishing a secure and trusted health data system for the UK:

  1. Major national public bodies with responsibility for or interest in health data should agree a coordinated joint strategy to recognise England’s health data for what they are: a critical national infrastructure.
  2. Key government health, care and research bodies should establish a national health data service in England with accountable senior leadership.
  3. The Department of Health and Social Care should oversee and commission ongoing, coordinated, engagement with patients, public, health professionals, policymakers and politicians.
  4. The health and social care departments in the four UK nations should set a UK-wide approach to streamline data access processes and foster proportionate, trustworthy data governance.
  5. National health data organisations and statistical authorities in the four UK nations should develop a UK-wide system for standards and accreditation of secure data environments (SDEs) holding data from the health and care system…(More)”.