Donated Personal Data Could Aid Lifestyle Researchers

Anya Skatova and James Goulding at Scientific American: “In the future it will be possible to donate our personal data to charitable causes. All sorts of data is recorded about us as we go about our daily lives—what we buy, where we go, who we call on the phone and our use of the internet. The time is approaching when we could liberate that data in support of good causes. Given many people already donate precious resources such as money or even blood for the benefit of society at large, this step might not be far away.
How could donated data help our society? Data is a rich source of people’s habits—shopping data from loyalty cards, for example, can reflect our diet. If people donate their personal data for research, analysis of it can provide scope to improve everything from understandings of the dietary pre-cursors to diabetes to the impact of lifestyle on heart disease.
But there are vital issues around the collection and use of personal data that must be addressed. Donation rests on trust: would people give their data away knowing that researchers will examine it, even if anonymously? Would they want others scrutinising their diet, or their shopping habits? Would people feel their privacy was being invaded, even if they had chosen to donate to help medical research?
Who would donate data to research?
Our recent research has found that around 60% of people are willing to donate their data for uses that will benefit the public. In some ways this is not surprising. As previous research demonstrated, people help others and take part in various pro-social activities. People voluntarily give to benefit society at large: they donate money to charities, or run marathons to raise money without knowing exactly who will benefit; they give blood, bone marrow, or even organs. They often do so out of concern for the welfare of others, or in other cases for more selfish reasons, such as enhancing their reputation, professional benefit, or just to feel good about themselves….
Donating data is certainly different from donating money or blood—there is very little obvious cost to us when donating our data. Unlike blood or money, data is something for which most of us have no use, nor has it any real monetary value to those of us that generate it, but it becomes valuable when combined with the data of others.
Currently companies leverage personal data to make money because it provides them with sophisticated understanding of consumer behaviour, from which they in turn can profit. But shouldn’t our data benefit us too?…(More)”