The Use of Our Personal Data in the Age of Accelerations

Things are moving quickly and there is no sign of them slowing down.

In his latest book ‘Thank You for Being Late, an Optimist’s Guide to Thriving in the Age of Accelerations’ the renowned New York Times journalist Thomas L. Friedman describes the many up- and downsides of living in our world today.

Friedman makes the case that we are at the dawn of a new era and claims that the three biggest forces that currently shape our world Technology, the Market and Mother Nature are all going through very rapid changes at the same time – causing in some cases tectonic global transitions.

More than ever before, such velocity will give individuals the ability to massively change our world. A single person or a small group of people will genuinely have the power to either improve the world we live in – or destroy it.

Even though Friedman preaches an overall optimism, his book also advises caution and historic reflection in these times of (exciting) acceleration.

A concrete example of how we should be cautious has been dominating the news over the past months when the beloved social media platform Facebook admitted to making a mistake in harvesting and sharing the user data of over 50 million Americans with a political consultancy company called Cambridge Analytica.

We are yet to fully understand the implications of the Facebook/Cambridge Analytica data breach and the effect that it has had (and will continue to have) on the lives of these 50 million users and shared some more ideas on this in an earlier article published on this blog.

It is safe to say that with the rapid changes in our world, we need to be a lot more mindful of what happens with our personal data.

Genomes.io has a vision in which such mindfulness is genuinely put into practice so that a ‘Cambridge Analytica catastrophe’ cannot occur when it comes to our DNA data.

As general consumers of many Healthcare technology tools we never want to be manipulated, abused or discriminated against on the basis of our genomics data by big corporates we have never even heard of.

Pharmaceutical are very interested in our genomic data and they are willing to pay very big money for it. Last week the pharma giant Novartis announced the acquisition of the US gene therapy group AveXis for the gi-normous amount of $8,7 billion and the deals that the company 23andme struck with companies like Genentech and Pfizer are another example that pharma is very (very!) interested.

We sincerely hope that these companies will act responsibly with our data.

But what are our guarantees?

Even though we find some reason in the claim that such partnerships can possibly lead to scientific advancement and the creation of new effective medicine, we also see a risk where DNA data can be exploited, cross-sold and eventually used to manipulate the individual consumer.

Imagine not getting a job because your employer knows that you are genetically more receptive to have heart problems or not being accepted for an insurance policy because of a certain personal health risk that could be there for you in 30 years time.

The enormous invasion in our privacy would get a lot worse with far bigger implications than the Facebook/Cambridge Analytics scandal.

Genomes.io firmly believes that ownership of such personal data should – at all times – remain with the individual user so he/she can monitor what it is exactly being used for. Only after having the absolute guarantee and transparency that their data will not be cross-sold or (ab)used for any other purposes than provided by the requesting party, a consumer can grant access by sending a GENE token to the respective tool.

Our approach genuinely puts the individual consumer in the midst of everything and can make him/her an active, participating witness to the progress that is being made in the development of a new medicine and scientific progress.

The decentralised network of the Blockchain offers us the perfect technological infrastructure to build our system and we are very excited about the infinite possibilities it has to offer in the growth of all our endeavours.

Living in a quickly moving world or not – we should always own our DNA data and decide who gets to work with it.

 

ICO Baby…….

Raising that cap, raising that cap. 

The ICO (Initial Coin Offering) – a relatively new concept used by startups to raise funds in order to progress their business idea. Simple, right?

Not exactly. The thing is, the ICO isn’t widely used, indeed, it isn’t even widely known outside of the immediate crypto-currency world.

Rather like the title of this blog may be, the ICO has previously been met with derision, scepticism and a certain amount of negativity, (it was difficult to think of a punchy title that grabbed attention but in a moment of wonder, the Groove Armada reprise of a classic came to the forefront of my mind).

Now, upon its release in 1999 the single itself only peaked at number 17  ,yet due to its use in a Renault advert four years later it re-entered the UK charts at number 11. It is hoped, nay, predicted that, the more people that become aware of the ICO, the more it will be utilised by increasing numbers of startups and investors alike.



The ICO in a snapshot:

The first ICO was held as recently as July 2013 by Mastercoin. There were many highly successful ICO raises in the following years (Ethereum raised $2.3m in its first 12 hours in 2014,just one very successful example). 2017 saw a sharp rise in the popularity of ICOs – by the end of the year they had, according to Cointelegraph, raised around $6 billion  during 2017.

So, what’s the problem? Everything is rosy in the ICO garden? You may (or may not) be surprised that the answer to that question is, no. It would be amiss of me not to discuss the negativity towards the ICO. There have been cases where the ICO has been used as a vehicle to carry out scams. The SEC has recently warned investors to be aware of ICOs being used to raise the value of a coin by increasing ‘hype’ before dumping it, making a profit in the process.

The platform Mobidea.com lists a number of signs of an ICO scam. Having trawled through a number of similar sites, the same issues appear to be repeated when you run into such a fraudulent affair:

1: The business often has a weak website

2: The business refers to an incomplete business plan (or white paper) on its site

3: The business does not mention any developers or team members

4: There is no clear roadmap mentioned on the website

5: The fundraising goal of the business is not capped

6: There is no direct way to get in contact with the team

All of these are legitimate warning signs and an investor in a start-up (or any business for that matter) should do their proper due diligence.

If you are interested to learn more about fraudulent ICO raises and how to recognise them, check out this list of Top ICO Scams in 2017 on Cryptomorrow.

The process of the ICO

There is the pre-ICO – a pre-sale if you like. It gives people an opportunity to invest in the company before the actual ICO. People who take part in the pre-ICO have the opportunity to purchase the coin at a much-reduced rate and also a higher bonus amount.

The ICO is held by companies to gather larger investors. Anyone can take part in an ICO – create an account on the company landing page and place your investment.

There are many benefits to joining at the crowd-sale ICO stage. If the project it is something you believe in, you can take heart that you were ‘there from the beginning’ and that you  helped the fledgling project spread its wings. There is also the fact that by investing, the company gives you tokens as an asset that you can sell at a later date. Bonuses are also given to investors at this early stage (although lower than at pre-ICO stage, there is still potential for profit when the coin reaches the exchanges).

‘Genomes’ is one start-up that is offering an opportunity to invest in an emerging and competitive market of Genome sequencing. We are a Blockchain application designed to privately and securely store an individual’s whole genome sequence data as well as enabling third party access when approved by the individual, in exchange for tokens known as GENE. Investors will be able to purchase the GENE token at pre-ICO stage and later during crowd-sale.

Staying with ‘Genomes’, I refer back to the aforementioned signs of an ICO scam. ‘Genomes’ boasts an accessible site detailing the market, nature of the project as well as a detailed and updated White Paper. The website and White Paper list members of the team, providing a pen picture of their background and role. The White Paper details a clear and succinct Roadmap of key dates as well as detail of the capped fundraising goal continuously seeking to allay the fears of the investor.

So there you have it, a brief, balanced snapshot of the ICO world. Yes, in its short life it has been used by scammers and there will be some who will forever advise to steer clear of the ICO. But my feeling is that it will continue to grow and will be around for a long time to come, allowing people to easily invest in new start-ups of which they feel passionately about.

Do get in contact with us!  We would love to hear your ideas on Genomes or our future pre-ICO. You can reach us via e-mail, Telegram or on Facebook or Twitter.

Like a certain hit single of the late nineties, some things just take a little time to reach their peak.

ICO Baby……..

 

It started with a quiz …….( & a home DNA test )

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?

 

It’s highly unlikely that the answers you provided on that particular quiz will ever be used against you, after all, the data has supposedly been destroyed. However, If we take this a little further than social media, what if not reading that license agreement, the T’s & C’s, the privacy policy or the app permissions meant that far more sensitive information was released about you; your bank details, your passwords, your address, your DNA, released into a marketplace where it can be bought or sold without you even realising? This would surely be a personal disaster and you would be more careful on what you agree to.

 

DNA?

 

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!

 

If you’d like to get all of the updates from the Genomes.io team, you can join our Telegram Group here follow us @genomesio