Dataset Information

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.

SUBMITTER: Skatova A

PROVIDER: S-EPMC6867598 | biostudies-literature | 2019

REPOSITORIES: biostudies-literature

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Psychology of personal data donation.

Skatova Anya A Goulding James J

PloS one 20191120 11

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 ...[more]

PMID: 31747408

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Project description:BackgroundThe SARS-CoV-2 pandemic has highlighted once more the great need for comprehensive access to, and uncomplicated use of, pre-existing patient data for medical research. Enabling secondary research-use of patient-data is a prerequisite for the efficient and sustainable promotion of translation and personalisation in medicine, and for the advancement of public-health. However, balancing the legitimate interests of scientists in broad and unrestricted data-access and the demand for individual autonomy, privacy and social justice is a great challenge for patient-based medical research.MethodsWe therefore conducted two questionnaire-based surveys among North-German outpatients (n = 650) to determine their attitude towards data-donation for medical research, implemented as an opt-out-process.ResultsWe observed a high level of acceptance (75.0%), the most powerful predictor of a positive attitude towards data-donation was the conviction that every citizen has a duty to contribute to the improvement of medical research (> 80% of participants approving data-donation). Interestingly, patients distinguished sharply between research inside and outside the EU, despite a general awareness that universities and public research institutions cooperate with commercial companies, willingness to allow use of donated data by the latter was very low (7.1% to 29.1%, depending upon location of company). The most popular measures among interviewees to counteract reservations against commercial data-use were regulation by law (61.4%), stipulating in the process that data are not sold or resold (84.6%). A majority requested control of both the use (46.8%) and the protection (41.5%) of the data by independent bodies.ConclusionsIn conclusion, data-donation for medical research, implemented as a combination of legal entitlement and easy-to-exercise-right to opt-out, was found to be widely supported by German patients and therefore warrants further consideration for a transposition into national law.

Dataset Information

Psychology of personal data donation.

Publications

Psychology of personal data donation.

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