Wednesday, May 01, 2019

Genomic data and the GDPR

From the PHG Foundation:

The potential of technologies such as these, together with other digital technologies to fall outside existing regulatory frameworks has prompted radical reform of data protection law across Europe. Thus, in May 2018 the EU General Data Protection Regulation (GDPR) came into force across the continent and in the UK, further national legislation has been implemented through the UK’s Data Protection Act 2018. This legal framework governs of the use of personal data in healthcare and research, and it explicitly recognises the category of genetic data for the first time (it will continue to apply in the UK regardless of Brexit).

However many, including Secretary of State for Health and Social Care, Matt Hancock, are concerned that the rules governing the use of genetic data could hinder the legitimate use of data for healthcare and research.

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