Mapping research initiatives with data sharing issues within the Life Science sector

Important results from the project

The aim of the project was to identify actors who have on their agenda to "investigate and shed light on data sharing and its ethical and legal aspects and who should potentially benefit from collaborating on these issues." These actors are expected to be in academia, healthcare, government agencies, research funders, companies, networks. The purpose was then to identify areas where potential collaboration gains exist, areas where there are apparent collaboration gains but where parallel investigations are justified and areas where collaboration should not take place.

Expected long term effects

The project has only been able to obtain responses from a small number of identified actors in the LifeScience area, which is why the survey may be considered incomplete. Of the responses received, however, many refer to investigations from the state´s public investigations, other national initiatives or authorities, so a general conclusion is that many actors have a hope that someone else will clarify the problem of data sharing of health data, or that this is not seen as a problem or is relevant for one´s own investigation or assignment.

Approach and implementation

In order to identify actors in the Life Science sector that investigate or need to investigate legal and ethical aspects of the use of health data and personal data from the health care system, as well as the secondary use of this data, selected key persons and legal networks were contacted. These people and networks were selected by the project becasue they were presumed to have either investigated the these issues within their own organisation or to have knowledge of which other actors are investigating or have investigated this. The contact was made by e-mail.