An overview of Scandinavian Biobanks and Health Registers - how they are accessed, plus info on legal, regulatory, and quality requirements.
I am currently slowly reading my way through The Ethics of Biomedical Big Data (Mittelstadt, & Floridi, 2016). There is a great chapter titled “Denmark at a Crossroad” by Klaus Hoeyer - essentially outlining that until recently, the population of Denmark was broadly supportive policies that broadly supported data and biobank data collection and secondary use. However, a series of mis-steps and perceived or real violations of public trust have led to a significant re-thinking. This is a country that negotiated non-adoption of many of the EU GDPR regulations because support was so high for data use, but examples of government using data in ways unexpected to the populace has led to the first time citizens withholding data or requesting withdrawal of data and specimens from publicly held repositories.
That’s really interesting, thanks Matthew. Really shows the importance of transparency throughout the whole process - and not shifting the intent (in this case, how the data is used) part-way through.
Another concerning perspective is offered here about the UK Biobank: https://massivesci.com/articles/uk-biobank-promise-genetic-association-bias-underrepresentation-minority-groups/
opengraphobject:[360518186926080 : https://massivesci.com/articles/uk-biobank-promise-genetic-association-bias-underrepresentation-minority-groups/ : title=“Huge genetic databases are hurting marginalized people’s health” : description=“White people could be offered genetic tests for certain health conditions, while other people could be offered incorrect or no testing at all”]