The potential for health data to power tremendous gains in medical research and treatment is a topic I’ve touched upon numerous times in the past, but these things tend to move quite slowly, so there is still room for deliberation on the topic, the latest of which comes via new research from the University of Bristol, which explores the psychology of people donating their data to research.
The study set out to explore whether donating personal data would be a viable compliment to the collection of consumer personal data in academic research.
A questionnaire was distributed to gauge individuals’ motivations for donating data in different contexts, such as for use in medical research. Three reasons in particular were emphasized: an opportunity to personally benefit, a prosocial move to benefit society, and a need to understand the purposes of data donation.
Social motivations
The results suggest that many people are quite happy to donate their personal data for societal purposes, with the strongest predictor for not donating being a desire to gain direct benefits from the donation.
It was also important for people to understand the context around their data usage, and specifically the consequences of their donation in terms of the societal benefits that would accrue from it.
“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,” the researchers say. “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 authors believe that their work provides a valuable stepping stone towards enabling the use of commercial data for the kind of research that benefits society.
“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,” they continue. “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.”
