For the last ten years I have been working as a clerical assistant to a prominent Dutch legal advisor (specialised in aspects of scientific medical research and privacy) and ethicist.

Since he also published in English, one of my tasks has often been to translate or correct his publications. Over the years I have become familiar with his thinking and terminology – and we all know what familiarity breeds….!

In Brussels, preparations are being made for the new GDPR (General Data Protection Regulation). On behalf of scientists – who by definition are only searching for the facts – he is one of those championing the cause of researchers threatened by a wing-clipping exercise. He has been working on a document he hopes will influence the debate on health data.

We are all supposed to be concerned about our privacy in this age of internet and electronic data, although very, very few people have actually had their ‘data’ misused. I am not referring to identity theft here, but the release of personal (intimate) information about ourselves to people who might know us personally.

My boss is passionate on the subject of allowing scientific medical research to continue making use of data culled from patients. He would not normally use the word ‘statistics’, but that is what it boils down to: meaningful statistical data which stands the test of scientific scrutiny.

Our present health care is based on the interpretation of what patients in the past have experienced. Only then can we correlate things like the incidence of lung cancer and smoking, for example.

More than forty years ago a man I knew personally very well was employed by a firm that amongst other things offered demolition services to customers. Nobody was aware then of the risk of asbestos to health. Indeed I remember staying in a holiday camp where the chalets were entirely constructed of asbestos!

Now scientific medical research has amply demonstrated the danger to health of inhaling asbestos particles. The chap I knew just about reached retirement, but he did die a premature death as a result of the demolition work he had carried out years earlier and his exposure to asbestos dust. His widow has been awarded a claim for compensation which at least softens the blow of losing her husband so early, and the income from his pension. Without that research, we could not establish these facts – it is as simple as that.

My boss makes the point – somewhat forcibly for the first time (for me) that Brussels is erring on the side of defining the legitimate use of patient data as being appropriate only when the need is ‘highest’. That sounds good until you ask the question: who decides that?

We are all aware that the tobacco manufacturers martial a formidable political lobby. Governments end up balancing the need to warn of the dangers versus the revenues tobacco sales generate. It begs the question: if politicians had been allowed to decide if research into the correlation of lung cancer to smoking was allowed or not using (statistical) patient data, would scientists have been able to demonstrate so effectively that smoking tobacco releases carcinogens that dramatically increase the incidence of lung cancer?

Governments today have to be seen to be promoting healthy lifestyles. In reality, the longer we live our ‘healthy’ lives, the more money we eventually cost to maintain by the state (state pensions, long-term geriatric care, etc), and the less revenue is obtained from the substances (tobacco, but also alcohol for example) which effectively curtail our life expectancy!

People (patient) empowerment – the right to decide based on the facts – is crucial. Empowerment only exists when (potential) censorship is taken out of the equation. This elevates the discussion about whether a ‘researcher’ who happens to know us personally can see personal details (like whether we have had a child or not – and that data has already been stripped of the ‘name and address’ details) ultimately to whether or not those governing us (national and ‘federal’ governments)  could be armed with the right to block research into something that might, in their opinion, turn into a ticking time-bomb under their administrations (and finances)!

We do not hold researchers to account; their peers do that, effectively and, if necessary, brutally – based on the data, the facts. We have the responsibility of holding those governing us to account. Politicians alone should not have the monopoly on releasing or disallowing the information we have a right to in order to make informed decisions.