Axel Kahn: ‘Knowledge is power’ – the issues surrounding data in the era of connected health

By June 05, 2015
Axel Kahn

What will be the ethical basis for medical care going forward? Professor Axel Kahn talks about the issues raised by connected health, robotics, neuroscience, and health data sharing platforms.

L’Atelier caught up with Professor Axel Kahn at the Health and Autonomy Fair which took place in Paris on 19-21 May. Doctor, scientist and essayist, he was a member of the French National Consultative Ethics Committee from 1992 to 2004 and is now head of research at INSERM (the French National Institute for Health and Medical Research). Here he sets out to explain the various ethical questions relating to the future of medicine.

L’Atelier: During your presentation at the Health and Autonomy Fair you talked a lot about innovations in robotics and neuroscience and the ethical questions they raise. How should the answers to these ethical challenges be found? Is it up to citizens or legislators to tackle these issues?

Axel Kahn: Well, legislators certainly have a role to play. From an ethical point of view, they need to set the limits beyond which French citizens could be in danger. In other words, the new [French] Bioethics Law must lay down basic principles, detailing what is essential for humanity and what may be jeopardised by the development or misuse of certain techniques. In the field of neuroscience, this applies to all the techniques capable of subjugating a person’s will and conditioning behaviour. Such activity clearly runs contrary to the principle of autonomy. So in fact although treating a psychiatric condition may ultimately increase the patient’s autonomy, it may well be that using the same methods one can diminish or even obliterate the person’s autonomy by conditioning his/her will and behaviour.

‟Legislators […] need to set the limits beyond which French citizens could be in danger.”

So of course there must be laws to avert this sort of thing. We’re not talking about forbidding a certain line of research or therapy but we do need to decide exactly at what point it would be a criminal offence to use powers acquired for therapeutic purposes for other ends.

Health in the digital era: a long list of new ethical issues


Aside from neuroscience, there’s another area that has in recent years been shaking up the medical world: data. Is this also an ethical issue for the coming years?

When it comes to medical data, there are two ethical issues. The first is inequality of access. It’s generally accepted that ‘knowledge is power’. This means that there’s a certain inequality between people who have knowledge and those who don’t which runs contrary to the principle of justice. On the other hand there is a second danger – that access can become too broad, especially when you obtain access to other people’s details. Following the logic of ‘knowledge is power’, whoever has access to our health-related data will acquire power over us. This development runs contrary our own independence, our liberty. These two risks, which are quite well-known, stem from the same line of thinking – i.e. that such power must not be transferred to anyone other than the person whose data it is.

So what policies should be adopted to deal with this issue of data access?

Well, unfortunately that’s very difficult. We understand the principles underlying data privacy: they are laid down by the CNIL [Commission nationale de l’informatique et des libertés/French National Commission on Informatics and Liberty]. Having said that, we know that the more information systems develop, the more obsolete these principles tend to become. A company such as Google cannot a priori access health-related data. However, by tracking what people are doing, the company can actually deduce quite a lot of health-related information. Which makes it a totalitarian company. The absence of any limits to information processing means that the huge amounts of data obtained – gathered without breaking any laws – can provide a substantial amount of information, which enables an organisation to know more about a person that the person him/herself.

So the Internet giants are now looking to play a role in the health sector of tomorrow, either by selling information or, like Google, getting involved in research into ageing – in Google’s case with an underlying idealistic aim.


Google, a ‘totalitarian’ company?

The Web titans may well play a growing role in connected health. At the same time however, we’ve seen over the last few years the emergence of sites designed to share health-related information. Are citizens going to take ownership of the medical sector?

Sites which enable people to share health-related information meet the need for individual liberty. Everyone using such sites is looking to take part in a constructive exchange of ideas in order to compare his/her views with others’ opinions. We’re not going to forbid that. This is certainly not about ‘policing’ users either.

Once again however, when any company is in a position to process an almost infinite amount of information it is certainly going to be able to obtain highly confidential information on people. And if this information is used – in a way that intrudes on people’s private lives – for surveillance or national intelligence purposes, then there’s clearly a problem. So this whole area is very complex, and there’s no miracle recipe. The Chinese did go so far as to block access to Google, but that was only in order to do just same thing themselves.

‟We must ensure that citizens are aware of these issues.”

Whatever happens, we must at least ensure that citizens are aware of these issues. People ought to know that we’re now up against a totalitarian company which has hitherto unimaginable reach, far exceeding George Orwell’s imaginings in his ‘1984’. People need to understand this so that they are forewarned and forearmed and understand how to resist this process. Because if people don’t understand the hold a company may have over them, the consequences are likely to prove even more harmful.


Legal mentions © L’Atelier BNP Paribas