Psychology of Personal Data Donation

it - Information Technology

Today, medical data such as diagnoses, procedures, imaging reports and laboratory tests, are not only collected in context of primary research and clinical studies. In addition, citizens are tracking their daily steps, food intake, sport exercises, and disease symptoms via mobile phones and wearable devices. In this context, the topic of “data donation” is drawing increased attention in science, politics, ethics and practice. This paper provides insights into the status quo of personal data donation in Germany and from a global perspective. As this topic requires a consideration of several perspectives, potential benefits and related, multifaceted challenges for citizens, patients and researchers are discussed. This includes aspects such as data quality & accessibility, privacy and ethical considerations.

Background: Large-scale, centralized data repositories are playing a critical and unprecedented role in fostering innovative health research, leading to new opportunities as well as dilemmas for the medical sciences. Uncovering the reasons as to why citizens do or do not contribute to such repositories, for example, to population-based biobanks, is therefore crucial. We investigated and compared the views of existing participants and non-participants on contributing to large-scale, centralized health research data repositories with those of ex-participants regarding the decision to end their participation. This comparison could yield new insights into motives of participation and non-participation, in particular the behavioural change of withdrawal. Methods: We conducted 36 in-depth interviews with ex-participants, participants, and non-participants of a three-generation, population-based biobank in the Netherlands. The interviews focused on the respondents’ decision-making processe...

Philosophical Studies Series

Large corporations are attracting criticism for their quasi-monopolist role in the digital data domain. It has been argued that they are no longer regular market participants but have become de facto market regulators against whom public and civil society actors are powerless even when faced with stark ethical misconduct. Companies such as Google, Amazon, Facebook, and Apple (GAFA) have become a new Leviathan: a monster for which people give up freedoms in exchange for other goods that they consider essential. Data donation is a strategy that could, if certain conditions are met, help tackle the overarching power of multinational enterprises. I will propose that data donation, understood as a specific type of transaction, has three distinctive characteristics: relationality, indirect reciprocity and multiplicity. I suggest ways in which ethical and regulatory frameworks for data donation should consider these characteristics to ensure that data donations respond to the institutional and power relationships that digital data use is embedded in, that data donations contribute to the public good, and that they and protect the personal needs and interests of people involved in it.

Navigating Privacy Concerns: Understanding and Addressing Users’ Hesitancy in Sharing Personal Data for Research, 2024

The collection of personal data is vital for advancing research in various domains such as social sciences, healthcare, and technology. Nonetheless, users' reluctance to share their personal information, driven by privacy, security, and misuse concerns, poses challenges for researchers. This paper synthesizes findings from two studies to explore the factors contributing to users' hesitancy, its impact on research validity, and strategies to enhance datasharing willingness. The combined insights emphasize the need for robust privacy practices and transparent communication to foster trust and improve research outcomes.

ead.univ-angers.fr

Post-Snowden, several highly-publicised events and scandals have drawn attention to the use of people's personal data by other actors and agencies, both legally and illicitly. In this article, we report the findings of a project in which we used cultural probes to generate discussion about personal digital dataveillance. Our findings suggest the prevailing dominance of tacit assumptions about the uses and benefits of dataveillance as well as fears and anxieties about its possible misuse. Participants were able to identify a range of ways in which dataveillance is conducted, but were more aware of obvious commercial and some government actors. There was very little identification of the types of dataveillance that are used by national security and policing agencies or of illegal access by hackers and cybercriminals. We found that the participants recognised the value of both personal data and the big aggregated data sets that their own data may be part of, particularly for their own convenience. However, they expressed concern or suspicion about how these data may be used by others, often founded on a lack of knowledge about what happens to their data. The major question for our participants was where the line should be drawn. When does personal dataveillance become too intrusive, scary or creepy? What are its drawbacks and risks? Our findings suggest that experimenting with innovative approaches to elicit practices and understandings of personal digital data offers further possibilities for greater depth and breadth of social research with all types of social groups.

In this article, we argue that personal medical data should be made available for scientific research, by enabling and encouraging patients to donate their medical records once deceased, in a way similar to how they can already donate organs or bodies. This research is part of a project on posthumous medical data donation (PMDD) developed by the Digital Ethics Lab at the Oxford Internet Institute, University of Oxford, and funded by Microsoft. We provide ten arguments to support the need to foster posthumous medical data donation. We also identify two major risks—harm to others, and lack of control over the use of data—which could follow from unregulated donation of medical data. We reject the argument that record-based medical research should proceed without the need to ask for informed consent, and argue for a voluntary and participatory approach to using personal medical data. Our analysis concludes by stressing the need to develop an ethical code for data donation to minimise the risks providing five foundational principles for ethical medical data donation; and suggesting a draft for such a code.

2020

This paper microfounds a consumer's preference for data privacy as a mechanism for concealing behavioral vulnerabilities. This approach facilitates a welfare analysis of di¤erent data privacy regulations, such as the GDPR and CCPA. Sharing data with a digital platform bene…ts a consumer through improved matching e¢ ciency with normal consumption goods at the expense of exposing those with self-control issues to temptation goods. Although the GDPR and CCPA empower consumers to opt in or out of data sharing, these regulations may not su¢ ciently protect exceptionally vulnerable individuals because of nuanced data sharing externalities induced by consumers'active and default choices.

AI & SOCIETY

This paper considers what liberal philosopher Michael Sandel coins the ‘moral limits of markets’ in relation to the idea of paying people for data about their biometrics and emotions. With Sandel arguing that certain aspects of human life (such as our bodies and body parts) should be beyond monetisation and exchange, others argue that emerging technologies such as Personal Information Management Systems can enable a fairer, paid, data exchange between the individual and the organisation, even regarding highly personal data about our bodies and emotions. With the field of data ethics rarely addressing questions of payment, this paper explores normative questions about data dividends. It does so by conducting a UK-wide, demographically representative online survey to quantitatively assess adults’ views on being paid for personal data about their biometrics and emotions via a Personal Information Management System, producing a data dividend, a premise which sees personal data through t...