WHEN we do a Google search, most of us are probably focused on the data we are trying to access.
We tend to be less aware that the very search terms we choose are in themselves data — information that can be used by corporations or governments to monitor everything from political movements to consumer behaviour.
Google search terms are just one element of so-called “Big Data”, the vast quantities of information being generated by our constant digital engagement.
At the end of last year, I wrote about the potential benefits of Big Data for public health, while also touching on the ethical issues this might raise.
As “digital epidemiology” begins to take its place in the public health armory, one group of researchers is arguing that the established rules for surveillance and research may no longer provide an adequate ethical framework.
“While changes in the ways in which epidemiologic information is obtained, analyzed, and disseminated are likely to result in great social benefits, it is important to recognize and anticipate potential risks and unintended consequences”, they write in PLOS Computational Biology.
“We argue that it is important to engage with these questions while the field is at an early stage of evolution in order to make ethical awareness integral to its development.”
Public health data could come from sources as varied as internet searches, social media exchanges, online purchases, or even the personal statistics entered into any of the 40 000 health apps you can download on to your smartphone.
Big Data has already demonstrated its value in providing early warning of disease outbreaks, but its potential goes well beyond that, encompassing everything from postmarketing surveillance of drugs to a better understanding of health behaviours.
So how do we take advantage of this data bonanza, without the unintended consequences for our freedom and rights?
This is, in some ways, as the PLOS authors acknowledge, an old dilemma.
“At the crux of the debate on the ethics of big data lies a familiar, but formidably complex, question: how can big data be utilized for the common good whilst respecting individual rights and liberties, such as the right to privacy?” they write.
New ethical frameworks will need to take into account the varied sources of data, the purpose and likely benefits of their use, the fair distribution of those benefits and, of course, potential harms.
We might well be more willing to allow use of data for public health purposes than for targeted advertising by corporations, for example.
These authors write that methodological robustness is also an ethical issue, given the potential for inaccurate predictions to lead to waste of resources, loss of trust in scientific findings and other harms.
One intriguing path to ethical use of data might lie in the emerging concept of “data philanthropy”, an idea being explored by the United Nations Global Pulse project, which seeks to establish public–private partnerships to share data for the public good.
It says Big Data is a “new renewable resource” that, with appropriate privacy safeguards in place, has the potential to revolutionise development and humanitarian practice.
“As people use mobile devices to communicate, buy and sell goods, transfer money, search for information on the internet, and share their lives publicly on social networks, they leave digital trails that private sector firms are mining to understand the needs of customers, track emerging market trends, and monitor their own operations in real-time”, the project’s website says.
The ethical issues do have to be addressed, but it would be good to see us use the oceans of data we now swim in to promote health and sustainability — not just for the marketing of the latest must-have consumer gadget.
Jane McCredie is a Sydney-based science and medicine writer.