Epidemiological research hampered by overly restrictive interpretation of privacy legislation
In recent decades, the infrastructure for conducting epidemiological research in the Netherlands has improved enormously. This is because there are more and more nationally covering disease registries, through the electronic patient file and the Basic Registration of Persons, with which you can trace people and approach them for research. In theory, this makes research into risk factors for cancer and long-term consequences of cancer treatment increasingly efficient. But the unprecedented digital and technological possibilities remain stuck in a swamp of seriously restrictive and opaque legislation. This is what Professor of Epidemiology Floor van Leeuwen says in her valedictory speech.
Privacy protection is important, but there must be a good balance between the individual interest in privacy protection and the social interest in more medical knowledge. There are currently so many different interpretations of the legislation and regulations that research in our country is significantly delayed and sometimes actually hindered and that we are in danger of lagging behind other countries due to the overly restrictive interpretation of the legislation. The complex procedures cost society a lot of money and slow down the increase in medical knowledge. This is also not what the patient organizations want; who want the long-term consequences of medical treatment to be mapped out efficiently and as quickly as possible. Researchers and the government must join forces to achieve concrete improvements.