How Important is our Genomic Data?

In the digital age we live in, information is everything. Facebook make billions through advertising, purely because of the information they collect from us about our habits, searches and interests.

As it has become more valuable, the amount of information we’ve been able to collect has also expanded due to technological and societal advances. Companies are constantly looking for the next and best way to collect our data which they can then use to target adverts for their products and services.

As I wrote late last year, advances in genomics and genomic sequencing have brought a previously inconceivable amount of data to the fingertips of scientists looking into what makes us, us. Techniques such as NGS and Sanger sequencing are allowing us to map our own personal genomes, with scientists using the technology to develop therapies for diseases like cancer and heart disease – hopefully creating a new form of ‘preventative’ medicine (stopping illness happening) as opposed to the reactive method we use today (treating patients after they’ve become ill).

This data has major ramifications when it comes to treatment, and countless lives will be saved or improved as a result of the invention of technologies like CRISPR.

However, what happens when this biological data gets into the hands of those companies? Surely this data is even more valuable than our consumer habits, allowing companies to target us with advertising more directly and authoritatively than ever before. If a company knows you have an increased risk of diabetes, for example, then you don’t have to make Diet Coke particularly ‘sexy’ in order to sell it, just say: Drink this, live longer. 

I think that this raises some really interesting questions.  

Do we own our Genomic Data?

If you have no way of finding out this data without the use of highly specialised, expensive and complex computers and processes which you or I likely have no access to, do you even have any ownership over it?

Or, if a company sequences your genome, who owns the information? Could a Google or Amazon fund these businesses, and then own that data, in order to target their products and advertising to you more easily? After all, as I’ve already mentioned, the advertising need not be overly persuasive or aspirational – if a company could prove that their product(s) were going to make you live longer or have a healthier life, wouldn’t you want that product?

Many would say no. In 2008, the GINA (Genetic Information Non-Discrimination Act) was signed, which was designed to prevent what the act called ‘genetic discrimination’ by insurers or employers. So that means that an insurer can’t charge an individual a higher premium on their insurance if they are predisposed to becoming ill in future, if they currently aren’t.

In May, the EU is going to introduce GDPR, the General Data Protection Regulation, to replace the now outdated 1998 Data Protection Act. The reason? The proliferation of data on the internet, which the original legislation doesn’t cover. GDPR aims to give ownership of individuals’ data back to those individuals. And there is mention of genetic data in this legislation.

I think that the next iteration of data protection legislation post-GDPR will pay even more attention to this type of data.

You’d like to think companies would not need regulating like this, but in a world where engagements are ruined due to husbands’ shopping (or viewing) habits being broadcast on platforms like Facebook thanks to cookies and targeted ads, who knows? 

Do You Want Your Fortune Told?

Historically, people have always gone to fortune tellers to try and learn what awaits them in their future. Regardless of your opinion on this type of system (and I suspect my audience of NGS specialists may not be fortune-teller enthusiasts), belief was always important when going to see these people – however convincing or prophetic fortune tellers claimed to be, they couldn’t offer certainty. 

But what if going to the doctor could provide certainty about your future? If every doctor’s surgery had an Illumina Sequencer (other sequencers are available) in their office, could they tell you what ailments, aches and diseases you have to come? Even if the answer is yes, is this a good thing?

Personally, I’m not sure that I’d want to know. We could get to a stage where we’re sequenced at birth. A person could live their whole life worried about developing a certain disease that they have a 30% chance of contracting, in the process giving themselves a heart attack because of the stress.

State involvement could also have a role to play. Last year we saw Apple refuse to give up the contents of the iPhone of a suspected terrorist. What if an NGS provider was asked for the genetic data of an individual? Could we see a point where, in a stand off with a bank robber, and after looking at said criminal’s genetic data, law enforcement begin throwing peanuts into the room, knowing that will flush the offender out?

Probably not.

But all the same, whether political, state-led or commercial, the rising amount and importance of available genetic data is sure to have a major impact. Technology, and information in particular, has changed more in the last 20 years than it did in the 100 before that, with no signs yet of slowing down.