logo
by Andy Peel 28th May, 2019
2 min read

Genomes – the very definition of personal data

Technology companies hold a frightening amount of personal data on us. From every location we have ever visited to everything we have ever searched, companies such as Google have a comprehensive profile of each and every one of us.

As an experiment, I recently tried downloading all the data that Facebook and Google hold on me. Ironically, the files were so large, and downloading them took so long, I ended up crashing my computer. Nevertheless, a quick Google search (because I wasn’t going to use Bing) reveals in some cases it can be more than 5Gb, equivalent to 192,000 word documents. The alarming volumes of personal data, and the way in which tech companies use it, continues to drive governments towards greater regulation.

For comparison, the size of the average human genome –  the blue print of our DNA –  is about 200Gb. With Matt Hancock’s aspiration to sequence a staggering 5 million genomes in the next five years, equivalent to 8% of the population, it won’t be long before genomics companies amass similar volumes of our most personal data, the very blueprint of what makes us who we are.

Perhaps unlike our recent Google searches, which are used to sell us advertising, our genomes contain information that is of considerable public benefit. Unlocking the wealth of information stored within them can enable scientists to understand more about rare inherited diseases or to diagnose and treat certain types of cancer. It will also usher in an era of personalised medicine that will allow treatments to be tailored to individual patients. By better understanding how people react to certain drugs, researchers can ensure treatments are more effective.

The UK is currently leading the global charge in the field of genomics, cementing its position as one of the most advanced healthcare systems in the world. But as the tech sector is currently learning, even the slowest governments will eventually begin to regulate, particularly if it involves people’s personal data.

As I’ve previously written, though, genomics is a regulatory minefield. The challenge for the UK government is to get the balance of regulation right. Go too light and people’s personal information is put at risk, threatening to undermine trust in what is a fast-growing field with huge potential. But go to heavy and researchers will not be able unlock the scientific secrets that lie within our genome.

The House of Commons Science and Technology Committee’s inquiry into commercial genomics is a sign of times to come. It’s positive that parliamentarians are eager to learn more about emerging fields in medicine, like genomics, but it’s inevitable that these inquiries will also scrutinise whether the technology should be subject to any new or strengthened regulation.

Select committee inquiries offer an important opportunity to make the case for balanced regulation, but they are not the government’s only vehicle for regulatory scrutiny. The reality is that businesses should be making these arguments long before any inquiries are announced, as by then it could be too late.

I was recently at a healthtech data event hosted at the Wellcome Trust, where I heard Lord Drayson give a talk. As a former Life Sciences Minister in the previous Labour government and now the owner of a healthtech company, Drayson had some interesting advice for the government officials and fellow healthtech entrepreneurs present in the audience.

Beyond revoking Article 50 – which got a good laugh – Drayson spoke about how vital it is to educate policy makers about complex or emerging fields within technology and medicine, estimating only 30% of people in government truly understand technology. It is logical that better decisions will be made if policy makers are fully informed about the permutations of proposed regulation.

Interestingly, Drayson also compared the challenge of building public trust in how our healthcare data is used, to the testing of skincare products on animals in the 90’s. He warned that if businesses didn’t take control of the narrative about the public benefits of accessing healthcare data, it could further public misunderstanding and ultimately result in overzealous regulation. Regardless of the comparison, it is certainly a fair point.

The public backlash affecting Facebook and Google has reframed the debate about how and why our personal data is used. The same could be true of genomics, unless the public are able to trust that their genomic data is being used responsibly and for the benefit of society, not just for private gain.

 

Want to keep updated with our insightful news at GK? Click here to subscribe to our newsletter. 

 

 

See more articles by Andy Peel