Clinical trial data is not a public good
18.09.13
I very much believe in the European welfare model: people should have access to healthcare, and the medicines they need, regardless where they live, whether rich or poor. When resources are scarce, those with the highest need should have priority. So in a way I consider access to healthcare a human right.
However, not everything within the system is a public good. Healthcare professionals like doctors and nurses have the right to be entrepreneurs, and should benefit from innovative ideas and personal commitments. Life science companies must have an incentive to invest and to compete. Behind most medical advances, such as medical devices, vaccines or medicines, lie private investors and innovators. The notion that all they do and produce becomes a “public good” is mistaken, and would be counter-productive if followed through. If there were no patents, there would be no pacemakers or cancer medicine. If anyone can copy a new medicine the day it comes to the market, no one would invest hundreds of millions of Euro (our pension funds, by they way) if there were no reward. The data from clinical trials, generated to get regulatory approvals and presented in medical journals for everyone to understand, are similarly something that have a value to the company.
As I have described before, my industry can be much better at sharing the summary results, and the data as such, with legitimate researchers. However, it is mistaken to consider these detailed results of research a public good. What other industry would be required to post all their trade secrets on the Internet? I grew up in Goteborg, a few kilometers from the development centre of Volvo, the carmaker. I remember they had a 3-metre high fence around their test track. I have not heard anyone complain about that secrecy. There must be a limit to what you put in the cloud.
