Panel Looks At Ethical Implications Of Big Data In Health

The potential for big data to yield better outcomes in all aspects of health is tremendous, and tapping into it has only just begun, said speakers at a recent panel in Geneva.

The abundance of data gathered around a single patient by hospitals, laboratories and physicians’ offices has never been so large and complex, as well as efforts to analyse and extract meaning from them. These developments are encouraging, but they also lead to important questions, especially ethical ones.

The session “Big Data and the Knowledge Economy: What is there for Global Health?” moderated by Carmelo Bisognano, head of strategy at Inartis Foundation, brought speakers from different disciplines to debate the promises and challenges of big data in the health area. The panel took place on 16 April as part of the Geneva Health Forum held in Geneva from 15-17 April.

Big data has become a buzzword in many areas, sometimes encompassing everything and anything. In the context of this panel, big data was defined in a broad way and but also to refer to personal information about people.

While the debate on big data and ethics generally raises concerns about the right to privacy, in the context of global health, a distinction should be made, according to Sridhar Venkapturam, a lecturer in global health and philosophy and director of the MSc in Global Health and Social Justice at King’s College, London. In fact, information-gathering systems, which are being built across the world, do not include a significant majority of the population from the global South.

“There is data from the majority of human beings on this planet, but one of the biggest problems is that we do not have very good information systems in many developing countries about basic things like births, deaths or diseases, or more what happens to these people,” Venkapturam said.

Successfully incorporating more individuals into databases could unleash the potential to achieve critical objectives in healthcare. The opportunities include linking up health systems while cutting costs, and more generally, enhancing methods to predict future global health trends.

In this regard, speakers pointed to Google Flu Trends – a service created by Google to attempt to make predictions about flu activity on the basis of people’s Google search queries. Although it generated questionable results, they said it is a great example of how people are excited about the future of using this kind of technology.

Beyond these opportunities, bigger sets of data also have the potential to provide a better understanding of “our quality of life, what causes, well-being, what is not well-being,” Venkapturam said. “We need to hold down that kind of potential.”

However, people who are taking up the opportunities in this vacuum – i.e., in developing countries where people are excluded from “information net” – are very much the private sector.

“What we have is that more and more data are being gathered, whether in developed countries or developing countries, by corporations,” he explained.

In the coming years, for instance, Google plans to connect everybody to the internet by using drones around the world. “That is fantastic,” he said, but “the problem is that their aim is not necessarily a public good. Their aims are private, corporate.”

Businesses want to understand human behaviour more than anything else in order to influence people to buy products. That is part of their business model, which depends on individuals becoming more comfortable with having less privacy, he explained.

But the tension is that in health, such a business assumption does not exist. “It is really something much more about using data to predict and influence people behaviour,” he said.

To face this challenge, an important role is, according to Venkapturam, to make ethics drive the data. In fact, “if we do care about health, the well-being of people, why do we not pursue data collection and information systems in a particular way that helps us,” he argued.

Some early projects by universities, for example, have already tried to use these technologies to predict various things such as risk of starvation in some geographical areas, or migratory flows. But “those kind of things are not driven by technologies, they are driven by values in using the technologies in order to gather information,” he said.

With regard to issues around privacy, these will remain a major concern at the heart of the debates, but as he highlighted, “the new reality is not the same everywhere in the world.” In some countries, information related to religious beliefs, for instance, can be very dangerous and harmful to people, showing why it is important that values drive data in the future.

Last but not least, the question of who – a government institution or social institution – is able to ensure these kinds of projects, is still open. Because there is no profit motive, it is unlikely to be carried out by the private sector, Venkapturam concluded.

Separately, on 1 May, the White House issued a report entitled, “Big Data And Privacy: A Technological Perspective”, showing how the use of big data can compromise the right to privacy of million of Americans, including in the health sector under the Section 1.4. The report contains five recommendations, especially that more policy attention should be given to the actual uses of big data rather than on its collection and analysis.

Joséphine De Ruyck is an intern at Intellectual Property Watch. She is currently finishing an LLM degree in intellectual property rights and ICT law at University of Leuven in Belgium. She holds a Master’s Degree in Law with honours from University of Louvain and an LLM degree from Queen Mary University of London. She has a strong interest in several intellectual property issues, especially access to health, climate change and new challenges facing copyright law.