Psychology of personal data donation

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.

Attitudes towards transactional data donation and linkage in a longitudinal population study: evidence from the Avon Longitudinal Study of Parents and Children

“…Perhaps, the importance of how sensitive the information that can be revealed through shared data for a person influenced different attitudes between sharing loyalty card data and banking records. Our findings are in line with previous research 16 suggesting that people are willing to pay more to protect their banking records as compared to loyalty card data in general. This concern was sometimes linked with fears that their identity could be exposed, or that behaviours could impact their credit scores.…”

“…Initially, many expressed surprise at the concept, which led to a willingness to donate this type of data, a change linked with a desire to find cures for diseases, or benefit society in more general terms. These findings reflect those of Skatova and Goulding 16 , who found that willingness to engage in data donation was linked with an understanding of the purpose of the research and the prosocial motive of an individual. Therefore, prior to approaching participants for consent, researchers should consider the need to emphasise the value of transactional data and the potential impact of the proposed research.…”

“…This was linked with a sense of obligation, altruism and expectation that the data used for research will contribute towards knowledge for the greater public good. Similarly, Skatova & Goulding 16 demonstrated that individuals are willing to donate their loyalty card data to research benefiting the public good. The decision to donate personal data was associated with three distinct reasons: being a good member of society, prosocial motivation and understanding the reasons for donating personal data.…”

“…One of the principal aims of the General Data Protection Regulation 12 is to afford greater control over personal data to the individual 13 , and the right to data portability (Article 20) has provided a legally mandated mechanism that can be used for the general public to obtain and donate their individual digital footprint data (an individual’s trail of online data 14 ) for research purposes 15 . We refer to data donation as ‘an act of active consent of an individual to donate their personal data for research’ 16 . However, previous research has demonstrated that participants do not always have sufficient knowledge or understanding about their personal data or what they can be used for 17 , 18 , suggesting that not all individuals are well-informed to make decisions about donating personal data.…”

App-Based Delivery of Clinical Emotional Freedom Techniques: Cross-Sectional Study of App User Self-Ratings

“…mHealth apps can help facilitate the use of consumer personal data for academic research purposes. This is particularly important because novel data donation is largely supported by individuals when data collection is for research purposes that can benefit individual health [ 83 ].…”