»It Is Good to Have a Lot of Data«

Increasing numbers of people are recording their physical activities – the number of steps they walk during the day and their sleep rhythms at night. Who ultimately controls this data – the state, health insurance companies, Google or the users of self-tacking devices? In this interview, Christiane Woopen, a distinguished expert in medical ethics, speaks about big data in the health sector.

by Sebastian Grote

In the novel Corpus Delicti, the writer Juli Zeh draws the gloomy picture of a state-imposed health dictatorship in which citizens regularly have to write reports on their health and the exercise they do. How far away from that are we today?

I do not think that this sort of scenario is imminent. Still, it is good to consider the possible future consequences of certain developments. It is better to intervene too early than too late. As far as the possibilities are concerned, it is certainly where we are heading. Juli Zeh once said, “Today, totalitarian structures appear in the guise of service offers.”

For example health insurance providers who offer their customers a bonus if they use exercise apps? Are we crossing a red line here?

First and foremost, these sorts of programs are about rewards, not disadvantages or repression. And people do not yet condone sharing their data to such a degree that such a program could become widely accepted in society. There are still many people who are decidedly critical of these sorts of offers and want to maintain control over their personal data. Still, in the long run, the benefits for some will be disadvantages for others.

Who would be the losers?

For one thing, all those who cannot fulfill the prescribed health standards due to an illness or their life circumstances. The second group would be those who do not wish to fulfill the standards because they have a different notion of what constitutes health. Last but not least, there are those who might even believe in the prescribed standards and would be able to fulfill them, but are reluctant to share their data. These are three constellations that should not lead to disadvantages for some people in a health insurance system that is based on solidarity. 

Many people do not even need financial incentives to measure the number of steps they walk every day, their sleep rhythm or their blood pressure with smart watches or other fitness trackers. What are people’s motives for this sort of self-tracking?

I think that many people simply feel reassured when they see something measured in numbers, charts or graphs. Some people like to trace developments over the course of days or weeks, to document things and share them with others. It is a question of personality – some prefer to rely on their own perceptions, others prefer quantification. There is nothing wrong with that.

Professor Christiane Woopen

is Executive Director of ceres, the Cologne Center for Ethics, Rights, Economics, and Social Sciences of Health. She holds the Professorship for Ethics and Theory of Medicine and is Vice Dean for Academic Development and Gender at the Faculty of Medicine. She is Chair of the German Ethics Council and Head of the Steering Committee of the 11th Global Summit of National Ethics/Bioethics Committees.

ceres offers a unique forum for interdisciplinary and international exchange on socially relevant issues in the area of health. The current emphasis of ceres’s work includes aging and demographic change, the digital transformation of society as well as health literacy in complex environments. By providing social and political information and guidance, ceres actively contributes to public debates and aims at developing interdisciplinary strategies for a fair and sustainable future.

What are the dangers of these sorts of developments?

If data is used to enforce an environment in which it is difficult or impossible to make individual choices, we should definitely raise red flags. With the Internet of Things, that is where we are heading. Of course the companies tell us that the devices they produce react to personal profiles, which makes everything more convenient. But the long-term effects on a person’s quality of life can be negative. We also know that almost all so called wearables do not sufficiently fulfill data protection standards. The data does not stay on the device, it goes into a cloud and is collated with other data. A massive advertising machinery is active in the background. So we should be very careful about relinquishing control over the way we live our lives. Otherwise, we will become the puppets of the advertising industry.

How does the flood of vital data change our world view? Are human beings turning into the sum of their data?

In fact, we are much more than the sum of our data. But in our perception and interactions perhaps we sometimes only regard as important what can be measured and quantified. It would be a pity if that were all that counts in the future.

Self-tracking is only one aspect. Google, for example, is increasingly investing in the medical technology sector, particularly in companies that collate patient data. What does that imply for the future of our health system?

First and foremost, it is the industry that profits from these data. In the past, we have seen that IT companies are increasingly penetrating different areas in which previously only health companies or health-insurance providers were active. If we take a closer look at Google’s parent company Alphabet, we will see that just a handful of companies have an incredibly powerful position in the health sector. On the other hand, I also see the advantages of big data in the health sector. But we are not making the best of these advantages in Germany because we are not pursuing the digitization process with enough courage and innovation.

Why are we not using these possibilities?

For one thing, we need to considerably raise our IT competence. But we also need higher-quality systems. Most algorithms of today’s health apps are too imprecise to meet medical standards. Eighty-percent precision, for example, does not suffice for many medical applications. It could lead to dangerous treatment recommendations. Apps designed to diagnose skin alterations, for example, are still much too imprecise.

How are you researching digital change at ceres?

When we speak about digital transformation, we can only focus on specific areas of application. At a conference we hosted at the beginning of this year, we focused on four such areas: work, health, consumption and relationships. In a study, we developed a concept for digital self-determination. On the basis of this concept, we surveyed over a thousand individuals on their notions of digital self-determination. We found out some very interesting things on the basis of which we would like to conduct further research.

Is our government prepared for this paradigm change?

Due to the immense speed of these developments, it is difficult to create a political framework which, in the best-case scenario, would even allow us to define global standards. Governments are faced with the challenge of having to regulate these developments because fundamental values such as self-determination, privacy and justice are at stake. At the same time, it has to promote these very developments. The EU Data Protection Directive, for example, adheres to an outdated paradigm – the principle of data minimization. In light of our technological possibilities, this is not always the most practicable solution. I also do not see why it should be the preferred solution. It is good to have a lot of data. For hundreds of years, people have argued – from and ethical standpoint – that we must apply a holistic perspective to human beings. But to do so, we need to be able to collate their data.

So you do not think that we need more regulation?

Regulation does not always have to mean prohibiting or constraining something. The EU would do good to take the entire process into consideration. Besides generating data, it also includes the processing and use of that data. I believe that severely penalizing the misuse and theft of data is much more important than minimizing the generation of data.

Are you more optimistic or more pessimistic about the future role of big data in the health sector?

I am convinced that people have a deeply rooted desire to be free and to have control over their own lives. Even if we become lax with our data for a while out of convenience, or fall for some advertising strategy, at some point we will become critical, start asking questions and react accordingly. As long as we do whatever is in our power to uphold our democratic order, I am optimistic.