Dutch citizens: data protection must allow for health research

NIVEL research shows that Dutch citizens are willing to share their data for health research. This is an important finding as within the European Union a draft regulation (the General Data Protection Regulation, GDPR) to harmonise data protection is being negotiated. This regulation may have serious consequences for health research.

NIVEL collaborated with some leading scientists in health research to publish a commentary in the European Journal of Public Health. In this commentary they emphasize the importance of an approach that enables future generations to benefit from the potential of health research. Such research may involve large-scale registries to determine disease prevalence.
 
There is a certain urgency on this topic. At this time the draft GDPR is being negotiated by the European Commission, the European Parliament and the European Council, the so called ‘trilogue’. This means that the Regulation will soon come to its final stage.
 
With a survey using the Dutch Health Care Consumer Panel of NIVEL the authors want to contribute to this discussion. The results show that citizens have a high trust in scientific researchers using
their data. Coppen: ”Trust is the paramount issue here.” The respondents report that they have a high trust in scientific researchers and that they find medical scientific progress through research important.
 
Finally, the researchers hope that the outcomes of the trilogue will recognise the need for health research with granular data. After all, the protection of data in research should be proportional to the risks and benefits of the use of that data for improvement of health through research. It is important that an approach that enables future generations to benefit from the potential of health research will prevail. This will allow future generations to have the same benefits from health research as past and current generations.