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We Must See A Person As A Person – Never As Data

Professor Barbara Prainsack’s goal is to bridge the promises of big tech and the approach from public health care people who don’t want to be too impressed. The social scientist prefers ‘personalised’ medicine to ‘precision’ medicine, and she is convinced that we must put ‘solidarity’ into the artificial intelligence health equation.

On one side we have big tech, who wants to collect as many information as possible, measure as much as possible and create a baseline of normal functions to compare. Their focus is BIG data. On the other side we have public health professionals, who try not to be impressed too much with the newest glitzy tech and think that clean air and good housing is much more important.

“My personal goal is to bring the two together,” says professor of comparative policy analysis Barbara Prainsack, who is also a member of the National Austrian Bioethics Council and the European Group on Ethics in Science and New Technologies. She is also part of the scientific advisory board of the Challenge platform. “What we need in order to make people healthier is may be not to go faster, as the tech industry says, but to be more personal and see the whole person – as a person, not as data. We must not collaps people into data points.”

She believes we are doing this with the current trend in ‘precision medicine’.

“I prefer ‘personalised’ medicine. To see an overweight smoker only as a set of biomarkers and behavioural data points is not enough. We need the contextual stuff, too. Maybe there are bad sidewalks, so she cannot walk properly, or she is a single mother of three. We need the social and economic data also. No one is a 100% responsible for their own health.”

That is why you argue for solidarity, when we talk artificial intelligence (AI) and health?

“Yes, people don’t chose to mess up their own lives. There is an ethical argument in this. But there is also an economic argument; the more you invest into social care, the more you save on health care.”

Barbara wants us to redefine what we mean with precision medicine, so it includes social factors.

“Otherwise we end up with a system, where the rich get holistic, personalised healthcare, but for most of the rest, it will be just automated care over the internet or phone,” she says.

Help and care differ from person to person. Her mother-in-law, for example, got a new hip when she was 92. And she is still going strong now being 97.

Actionable Insights

According to Dr. Prainsack there are huge promises in the Challenge platform.

“It looks like the wet dream of precision medicine bringing so much data together. But working with people in the consortium, I find that there is also a modest, sceptic and humble approach to what data can do. I appreciate this, as I don’t like the ‘data is the new oil’ ideology: Collect as much data as possible first, and think later about what we can do with it. We must first discuss which questions we want to answer.”

“What I hope comes out of Challenge and what we have a moral obligation to get closer to are actionable insights. That we can actually improve some peoples’ health in an ethical way. It can hopefully also help us understand what we cannot do from an ethical point of view. On the other hand, when integrating biometrical and social data, we will be able to show how social and economic circumstances are an important factor in shaping health,” she says.

Collective Rights

Barbara Prainsack does not believe that giving people more individual control over their data is enough. In order to ensure that data is used for the public good, we also need more collective control over what is done with our medical and other kinds of person sensitive data.

Neither does she think that individuals should own their own data in a legal sense – and they should never be able to sell their data, she underlines. Data should be owned collectively by the people, and control should neither be in the hands of a government nor any other institution alone.

“We need a governance model of our data, where also civil society participate,” she says. “Collective governance is very important. We need collective control, and you can have that without property rights. You can have control over you flat, even if you don’t own it. It is a bit like we can control what is done with our bodies although we cannot sell it. With data is the same. You can control your data without having property rights over it. And we should use our personal data for the collective – not only for the individual.”