ArticlePloS one2019
Psychology of personal data donation.
Article in PloS one, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 25 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
25 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Directions in abusive language training data, a systematic review: Garbage in, garbage out.PloS one · 2020Pooled it
- Digital Data Donation With Adolescents.Annals of the New York Academy of Sciences · 2025Article
- Developing Requirements for a Standardized System to Return Individual Research Results Back to Study Participants: Narrative Review.Interactive journal of medical research · 2025Review
- The Impact of Trust and the Role of the Opt-Out Mechanism in Willingness to Share Health Data via Electronic Health Records in Germany: Telephone Survey Study.JMIR human factors · 2025Article
- Health data sharing in Germany: individual preconditions, trust and motives.Frontiers in public health · 2025Article
- Linking digital footprint data into longitudinal population studies.International journal of population data science · 2025Article
- Overcoming biases of individual level shopping history data in health research.NPJ digital medicine · 2024Review
- Harnessing digital footprint data for population health: a discussion on collaboration, challenges and opportunities in the UK.BMJ health & care informatics · 2024Article
- How to Elucidate Consent-Free Research Use of Medical Data: A Case for "Health Data Literacy".JMIR medical informatics · 2024Article
- Participant characteristics and reasons for non-consent to health information linkage for research: experiences from the ATHENA COVID-19 study.BMC medical informatics and decision making · 2024Article
- Personal data store ecosystems in health and social care.Frontiers in public health · 2024Article
- Using Shopping Data to Improve the Diagnosis of Ovarian Cancer: Computational Analysis of a Web-Based Survey.JMIR cancer · 2023Article
- Understanding Public Attitudes and Willingness to Share Commercial Data for Health Research: Survey Study in the United Kingdom.JMIR public health and surveillance · 2023Article
- Estimating carbon footprints from large scale financial transaction data.Journal of industrial ecology · 2023Article
- Contextual Exceptionalism After Death: An Information Ethics Approach to Post-Mortem Privacy in Health Data Research.Science and engineering ethics · 2022Article
- Donating Health Data to Research: Influential Characteristics of Individuals Engaging in Self-Tracking.International journal of environmental research and public health · 2022Article
- Public attitudes towards sharing loyalty card data for academic health research: a qualitative study.BMC medical ethics · 2022Article
- Privacy-preserving local analysis of digital trace data: A proof-of-concept.Patterns (New York, N.Y.) · 2022Article
- Effectiveness of Digital Forced-Choice Nudges for Voluntary Data Donation by Health Self-trackers in Germany: Web-Based Experiment.Journal of medical Internet research · 2022Article
- Secondary research use of personal medical data: patient attitudes towards data donation.BMC medical ethics · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Advances in digital technology have led to large amounts of personal data being recorded and retained by industry, constituting an invaluable asset to private organizations. The implementation of the General Data Protection Regulation in the EU, including the UK, fundamentally reshaped how data is handled across every sector. It enables the general public to access data collected about them by organisations, opening up the possibility of this data being used for research that benefits the public themselves; for example, to uncover lifestyle causes of poor health outcomes. A significant barrier for using this commercial data for academic research, however, is the lack of publicly acceptable research frameworks. Data donation-the act of an individual actively consenting to donate their personal data for research-could enable the use of commercial data for the benefit of society. However, it is not clear which motives, if any, would drive people to donate their personal data for this purpose. In this paper we present the results of a large-scale survey (N = 1,300) that studied intentions and reasons to donate personal data. We found that over half of individuals are willing to donate their personal data for research that could benefit the wider general public. We identified three distinct reasons to donate personal data: an opportunity to achieve self-benefit, social duty, and the need to understand the purpose of data donation. We developed a questionnaire to measure those three reasons and provided further evidence on the validity of the scales. Our results demonstrate that these reasons predict people's intentions to donate personal data over and above generic altruistic motives. We show that a social duty is the strongest predictor of the intention to donate personal data, while understanding the purpose of data donation also positively predicts the intentions to donate personal data. In contrast, self-serving motives show a negative association with intentions to donate personal data. The findings presented here examine people's reasons for data donation to help inform the ethical use of commercially collected personal data for academic research for public good.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.