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Is Genomics Research Being Held Back by Data Restrictions?

on Wednesday, 15 May 2019.

Matt Hancock, Health Secretary, has announced that, if the UK wants to be seen as the world leader in genomics research, data protection laws must ensure that the restrictions on this type of data are not stifling the process.

The Health Secretary used his speech to air his frustration at how "game-changing" and often "life-changing" data collected through genomic sequencing research cannot be used because of current data protection rules. An example of this was the inability to test for all cancers because of current data rules blocking the use of certain data sets.

The hope is that greater flexibility around the use of research data in genomics will allow clinicians to get the most out of these large data sets created through genomic sequencing. Matt Hancock was quick to reassure that the call for greater flexibility will not be at the cost of patient data safety.

The issue of patient data safety in genomic research has been called into question by recent data breaches reported in the media, including the US company, FamilyTreeDNA, which secretly released millions of records to the FBI and has been a specific area of concern raised by the Science and Technology Committee tasked with looking into commercial genomics.


The balance between utilisation of genomics data and adhering to a stringent data protection regime is a difficult one to achieve. There are many in the genomics industry who feel the only way for patients to benefit from whole genome sequencing is for the data to be used commercially. The issue with this is that there are significant challenges to using research data commercially.

The one thing everyone can agree on, however, is that patient data safety, and trust in the sector, is the number one priority. If the proposed new ethical framework can help to strike this balance, it will certainly be interesting to see what commercial products come to market as a result.

Do you have concerns regarding patient data usage in a commercial landscape? Contact Laura Barrell in our Pharmaceuticals & Life Sciences team on 01923 919 313, or complete the form below. 

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