So, you’ve you filled in an online quiz see what your answers tell you about your personality. Many of us have probably done similar. Which sports personality are you? Which celebrity are you? A pretty inane way to pass the time with outcomes that no one really cares about. But what if you’d known that by filling in that quiz your details and that of your friends are being shared at will and utilized however the quiz owner chooses.
We’ve heard recently that Facebook struck a deal with Cambridge Analytica to share data on up up to 50 million Facebook users harvested from answering a simple personality quiz. This was against the Facebook terms and conditions at the time, but would you have known that if the media hadn’t told you?
YES. With the ever-growing popularity and simplicity of home DNA testing ( or genotyping as it is formally known) from services like 23andme.com, ancestry.com and helix, a huge amount of valuable data is being gathered and more importantly stored, trended and traded with major pharmaceutical companies, and up to 80% of their customers are agreeing to this sharing of data in the interest of genetic research. But, we also have to understand who owns that data and already there are concerns over the clarity of the privacy policies for such companies.
The genotyping service that these companies provide for $99 (or less in the Black Friday sales), will only give you limited results from your spit sample. Limited because they currently only carry out a small portion of the possible testing that could be done on your sample (Approximately 0.1%). Yes, the genotyping service is great if you are looking for a brief insight into your DNA and it makes a great gift but the actual possibilities are far more interesting.
The real and complete test is known as full genome sequencing. With a little more effort and expenditure, EVERYTHING, 6 billion genetic building blocks, the entire makeup of you, can be analysed and reported on.
Currently, full reporting is not commonly offered due to being cost prohibitive, but, in recent years, the cost of carrying out the sequencing of a full genome has dropped dramatically from $100 million in 2001 to around $1000 per genome in the present day . That cost is expected to continue to fall and, with no doubt, the aforementioned web services will start full sequencing. With each test that customers submit their data mine gets bigger and bigger and therefore more valuable. This is where the box ticking to not share your data becomes really important…….
Of course, data sharing is optional, as is if you prefer they store your sample or at your explicit request have it destroyed. Why would they want to keep your sample anyway, that would cost money?! Maybe, as costs continue to fall they have realised they will be able offer you a discounted full genome sequence in the future. Forward thinking…..and wow, they certainly have a lot of samples.
Ancestry.com have reported that in 2017, up to 1.5 million test kits were purchased between black Friday and Cyber Monday, that’s 1.5 million in a weekend! Overall it is estimated they have sold 6 million tests since launch in 2012. If even a portion of these kits are utilised, the available database is phenomenal. For example, cross referencing the chances that males living in Northern Europe at age 40 with blonde hair and blue eyes have a specific condition could be pure gold for some very targeted marketing campaigns through the likes of Facebook (they already know what you look like and where you live).
With the way the technology is currently progressing, it is possible that in the future, that full genome sequencing will be carried out at birth, the BabySeq program is already underway in the US as a pilot. There will likely be some questions raised by this but many will allow it to go ahead and also allow their data to be shared without too much thinking.
Considering the above, whether it is your newborn’s data or your own, once the sequencing is complete, you need to know what to do with all the data. Your personal genome and its associated data could top 1TB. We’re not just talking about size, we seriously need to think about security.
The data could tell us so much about ourselves, but just as importantly it could tell other people or companies things about us we might not want them to know. In a recent study in the US whereby a random group of 50 40-50 year olds were sequenced, 20% of them found they had an underlying condition they didn’t know about and were not displaying any symptoms. Would you really want your life insurance provider to have unlimited access to this information, if you had a high risk of developing a specific health condition, they might refuse to cover you on that one condition or even not cover you at all. What if your employer got hold of your data? Would you be discriminated against automatically? Could you even be blackmailed for your data? Not only can the data save lives but in the wrong hands could ruin lives.
Your limited data may already be shared anonymously to third parties but with access to a full genome it may not be long before they can add a name to the data. After all, the ancestry.com test results already shows us potential relatives when it sends the results back, it wouldn’t take long to build up a family tree.
What if you could keep your data secure and make it work for you at the same time?
Genomes.io is leading the way in offering a full service genome store, purchase your sequence, store your data in the cloud and even trade your data anonymously utilising super – secure Rockchain technology or mix any combination of the above. All this whilst giving assurances that your data is completely safe.
It also provides an ethical means for the third parties to interrogate your data in a transparent manner protecting you and the requester from future allegations of foul play, only sharing the parts of your data you agree to share, no hidden T’s & C’s where you give up the rights to your data.
Utilising the GENE token from Genomes.io, third parties can request access to parts of your completely anonymous data. Should you choose to accept the trade, you will receive your GENE tokens and the requester will receive the data almost immediately.
Apart from sharing your data for research purposes you will also be able to use the tokens to interrogate your own data in a normal manner, without having a geneticist on hand! Imagine, just typing ‘am I allergic to milk?’ and getting an instant definitive answer without the need for costly trips to the clinic.
So whilst the rest of the world worry about the Cambridge Analytica scandal, maybe you have just put your sample in a tube and are about to test your DNA, but you’ve thought twice and ticked that box not to share your data. After all, it is the most personal data you own and it truly does belong to you and you alone.
And to think, this all started with a quiz!