Guidance for Genomics Data

Genomic Data

The storage and analysis of human -omics data is becoming ever more important. It increasingly is becoming indispensable for medical research. At the same time, it is increasingly attracting scrutiny from regulators. Our aim is enable safe analysis in medical research whilst preventing mis-use.

Data involving human genetic sequence legally falls under a special category of sensitive data under the Data Protection Act 2018  and the UK GDPR. This aspect has the attention of the Information Commissioner's Office (ICO).

The purpose of these guidelines is to assist the Faculty and Imperial College London researchers in maintaining good practice that complies with the law, respects data subjects rights, complies with Imperial Values and helps keep the good reputation of Imperial.

As this is a fast-evolving area, the document is itself dynamic and subject to regular updating.

It is recommended that investigators read the Genomics Information Governance Guidance and submit a Data Activity Risk-assessment (DART) with the guidance in mind when acquiring, storing and processing (analysing) any sort of massively-parallel sequence dataset on humans. That includes not only patients but any humans, including ostensibly healthy subjects. It mainly applies to sequencing (-omics) and includes other massively parallel analyses (eg SNP arrays).