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.

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

Comments ( 0 )

    Leave A Comment

    Your email address will not be published. Required fields are marked *