Balancing Privacy and Societal Good

Privacy and the governance of those who have access to or hold data about members of our society have long been a hot topic when it comes to monetisation of that data. The DPA and latterly GDRP have sought to introduce data protection regulation in the UK to redress some of the concerns brought about by the wholesale collection of personal data by big tech and the wider adoption of digital technologies across the economy.

Other privacy concerns clearly exist regarding how big data sets such as patient records are being used by privately and publicly funded researchers to further medical science. More recently with the use of mass surveillance technologies to aid in the tracking and tracing of potentially Covid-19 infected subjects in Singapore and additionally enforcing the lock down in countries such as China. The anonymising of data or specific opt ins or consented participation are one set of protections that might help with balancing the need to protect our societies health and privacy.

The resent sale of the DNA site GEDmatch to forensic genetics firm Verogen resulted in the acquisition of 1.2 million DNA tests results by that company. GEDmatch had already played a role in identifying a suspect serial killer in 2018 before its sale and had assisted a number of other law enforcement agencies before updating its privacy policies to enable an opt out for those uploading DNA testing results. The question for society is whether the ends justify the means. Does catching criminal outweigh the rights around your personal data ?

Its yet to be seen whether at a societal level what all the positive and negative impacts related to this transaction might be, however this case makes it clear there are real opportunities in combing data sets and we will see companies being bought for their datasets and aggregated with other data and technologies such as AI where jurisdictions allow.

During the current crisis one could for-see the benefits of combining data sets such as, GPS and phone records with, health records or Corvid-19 testing results. Either in informing contact tracing, Or in providing metrics for the modelling of disease transmission patterns either spatially or temporally, and to support evidence based decision making. In the UK at least we are unlikely to see un-consented use of that data in this way but one does have to ask would it save lives ?

Huge questions then remain regarding ownership of data, especially inferred data, consent to use or hold our data, privacy, ethics, and data sovereignty. What is clear is that there are potential societal benefits to big data which will need our policy makers and citizens to engage with in the years to come

#privacy #consulting