Editor's note: The following essay is reprinted with permission from The Conversation, an online publication covering the latest research.
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.
Can the pitfalls be avoided?
Of course there are the 40% of people who wouldn’t give away their data even if it was used for public benefit—and it’s important to understand their reasoning. Our study found that, for many people, the decision to donate their data depends on for what purpose the data will be used—as well as on assurances on how securely it will be stored. Given there have been so many reports of loss or misuse of personal data it’s hardly surprising some are reluctant to give theirs away. Trust is key.
In contrast, many of the respondents in our study reported that, in all likelihood, many corporations are already using their data for all sorts of purposes, so why not also use it for the public good? Perhaps the most important thing to draw from this is that it is crucial for researchers that collect and analyse personal data to ensure the highest ethical standards by ensuring those involved are able to give informed consent, and subsequently track and control the use of their data.
Making good use of donated data
Can personal data actually contribute to greater understanding of the causes of illness and, if so, will this be useful in keeping people healthy in the future? This big data analysis is often misunderstood. Rather than providing evidence for direct cause and effect, it is predominantly a hypothesis-generating research tool. By looking for patterns in the data, or using it to test hypotheses against, it’s possible to arrive at often unexpected insights. These then become the basis of further scientific research and testing, such as clinical trials.
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?
There are still many unanswered questions concerning people’s attitudes towards their data. Do people want control over their own personal data? Do we want to decide what can be done with it? And what’s it really worth anyway? Presently, the companies that record our personal data are also the owners of it. However, that data can tell us much about ourselves and can help society solve real problems. It’s time we have a say in how our personal data is used, and ultimately benefit from the insight that it can bring.
The authors do not work for, consult to, own shares in or receive funding from any company or organisation that would benefit from this article. They also have no relevant affiliations.