Using data for health; the good, bad and ugly

Genome science is increasingly being seen as the modern way to improve healthcare. BUT to make the revolution happen requires not only the mapping of sensitive genetic information and collection of medical data, but the storage and sharing of this data – and with that comes concerns about anonymity and security.

These concerns are not just around leaking or accidental sharing, where a single slip-up can cost someone their life’s savings or hemorrhage millions of people’s data profiles across the worldwide web,

What if the data is sold? There are no limits to what private sector companies could use it for – from bespoke pharmaceuticals to personalised marketing and beauty products.

It’s easy to see just why we are so hesitant to give access to our highly personal medical information, especially when the implications of doing so are not even yet fully known, and the security around them open to question.

BUT something interesting happens to our anxieties when it becomes one’s life in the balance not one’s life savings.

Patients suffering from life threatening conditions and diseases are often more willing to share their most personal data with organisations and research studies who are committed to using it to improve scientific understanding and ultimately change the way we treat, cure and prevent diseases happening in the first place.

Suddenly their anxieties over privacy and data protectionism are overridden by a far stronger emotion. Survival. In this instance some abstract anxiety around having your bank account scammed or your identity cloned seem to pale into insignificance; dwarfed by the simple wish to stay alive – or to live a healthier, active and more productive life.

They are prepared to accept the downsides and shoulder the concerns because the potential upside is so enormous.

One such programme, the 100,000 Genomes Project is a venture which is fully mapping the genomes of about 70,000 volunteers with their permission.  The project is therefore responsible for managing the genetic and medical data – including who is allowed to have access to it and for what purposes (after it’s been stripped of any identifiers like names and NHS numbers).

While the 100,000 Genomes Project is still in its early stages, the initiative has already started to give answers for rare disease patients after years of inconclusive tests and unexplained symptoms. And it’s well on the way to building a genomic medicine service for the NHS in the future.

So how come the government haven’t mandated compulsory use of everyone’s genomes on the register? Is this a matter of compulsion – should the government be mandating genome donations as being in the national good and therefore a compulsory act of citizenship?

From December 2015 everybody living in Wales was put on the ‘opt out’ system as an organ donor meaning you have to register and categorically state that you will not donate any of your organs when you die if this is what you choose. Given that most of the population don’t really mind donating their organs but are too busy / lazy to register their choice surely this is the right way to go in order to save more lives? Or, are we just back in the grey area of human rights having the government own our organs the moment we die?

Perhaps, if the human rights issues arise around openness, and the warranting of permission to use and control our personal data, therefore to give that permission is an enormous commitment – one that some believe should be rewarded.

So perhaps this is more a matter of exclusion – where only those people who have willingly given their genome get to enjoy the benefit of the discoveries it yields?

But then does that exclusivity create a human rights violation in itself?

Let’s hear your thoughts.

#DNAgeYes   #DNAgeNo




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