Would people be willing to give their personal data for research?

New research led by the University of Bristol has found that over half of people would be willing to donate their personal data for research to benefit the wider general public.

The study published in PLOS ONE today investigated whether the donation of personal data could be a publicly acceptable act to support the use of consumer personal data for academic research.

The researchers developed a new questionnaire that measured individuals’ motivations for donating data, which could be used in future research on data donation in different contexts, such as medical data. The questionnaire explored the intentions and reasons of 1,300 people to donate personal data.

The newly developed questionnaire contained three distinct reasons to donate personal data: an opportunity to achieve self-benefit, prosocial motive to serve society, and the need to understand the purpose of data donation.

Social Duty considered the desire to serve society and give back to community. Self-interest reflected the need to gain personal benefits as a results of data donation, such as reputation and avoiding feeling guilty. Purpose showed the need to understand the consequences of data donation as well as the importance of understanding what will be done with the data after donation.

The research found that the strongest predictor of the decision to donate personal data was the desire to serve society, while the strongest predictor of the decision not to donate personal data was the need to gain direct benefits as a result of data donation.

The study also identified that in the context of personal data, the need to know the consequences of donating personal data was an important third factor influencing the decision whether to donate.

Dr. Anya Skatova, Turing and Vice-Chancellor’s Fellow in Digital Innovation and Wellbeing in the School of Psychological Science, said: “Digital technology opens up a new era in the understanding of human behaviour and lifestyle choices, with people’s daily activities and habits leaving ‘footprints’ in their digital records.

“Our results demonstrate that these motivations predict people’s intentions to donate personal data over and above generic altruistic motives and relevant personality traits.”

The study is the first step in opening up the possibilities of a new method that could enable the use commercial data for research that benefits the public good.

Dr. Skatova added: “The creation and use of data generated by each and every one of us for industry is here to stay, along with all the good and bad that can entail. In these times where consumer data is mined by companies, data donation can redress this power imbalance by providing a safe and ethical route that allows individuals to explicitly consent to what research organisation they share their data with, and for what purpose.”

The study’s findings could be used to support how the opportunities created by the use of commercial data in academic research more broadly, and health research specifically, are communicated.

The research has also shown that different forms of empathy play a role in defining various forms of prosocial motivation, which should make a difference in the context of data donation. Future research could investigate what personality differences or contextual factors can explain differences in motivations to donate personal data.