Test markets: can DNA testing companies be trusted with our most personal data?

Every year there are more companies offering some variation on the service where, in return for you spitting in a tube and popping it in the post, they will break down everything from your family’s ancestry to full genome sequencing or your predisposition to certain diseases.

Its rapid rise has been driven by two factors. Firstly, costs are falling – drastically. Where such a service would once have set you back millions of dollars, now it can now be done for as little as $99. Secondly, people increasingly expect that they should be armed with any and all data on their health.

“There’s a fear of missing out – a kind of ‘If I don’t do this, I’ll never know’ attitude,” says Nick Dutnall, formerly a partner at creative agency Aesop, which counts Bupa among its healthcare clients, now managing partner at BBD Perfect Storm. “People want factual evidence about their own genetic make-up and it’s really powerful. It’s human nature to want to know.”

This innate desire to understand what’s going on in our bodies has been magnified by aggressive marketing strategies. Advertising by genetic testing companies increased 80% between 2015 and 2017, according to Kantar Media, and spend by two of the biggest players in the market – Ancestry and 23andMe – now amounts to hundreds of millions of dollars a year.

But the goal of this massive media spend has never been to “make money from selling kits,” according to a 23andMe board member who spoke to Fast Company back in 2013. Rather, it’s to “become the Google of personalized healthcare”.

In other words, there’s been a data arms race quietly intensifying. It’s estimated that one in 25 American adults have used an at-home DNA testing kit, with Ancestry recently revealing that 7 million people (including 2 million during the last four months of 2017) have sent it their saliva and 23andMe saying it has around 5 million users.

“This is just the tip of the iceberg in terms of the data available,” says Dr Vernon Bainton, chief medical officer at Havas’ healthcare division Havas Lynx. “But it starts to raise all the questions about consent and the challenges we all need to work together to solve.”

Many of these companies alert people in their T&Cs that, in exchange for a genetic profile, their data would be shared with third parties for medical research purposes. However, earlier this year a spotlight was turned on the issue of privacy when 23andMe inked a $300m deal with GlaxoSmithKline (GsK), giving the pharmaceutical giant access to user data for the goal of developing new drugs.

“The negative story out of this is a big pharmaceutical company getting our medical data,” says Dutnall. “But 23andMe claims 80% of people on its books are happy for their data to be shared, so the positive is that GsK can be much more targeted. It will cut years off the development of drugs.”

Despite the long-term benefits it might bring, in the short-term it has given rise to fresh concerns over how genetics testing companies are sharing this data for profit. And while it has led to many, including 23andMe and Ancestry, signing up to a set of voluntary guidelines to ease concerns over how and where data is shared and promising to now obtain “express consent” from customers, the move has done little to ease other worries over the silos beginning to emerge as private commercial entities forge exclusive data-sharing partnerships with multinational corporations.

“Giving unilateral access to one company creates a silo,” explains Bainton. “Silos are really good at creating control, authority and profitability; they are not good for having a diverse, better solution.

“Robust compliances in the healthcare sector are there to safeguard people; they are not about the money. We know data-sharing needs to improve… but there is a lot of razzmatazz when you go off and do something disruptive and no thought to how to deal with the aftermath if mistakes are made.”

One company trying to solve this issue is Nebula Genomics, which was co-founded by Harvard Medical School professor George Church. It recently revealed it had raised $4.3m in funding to create a secure, blockchain-enabled marketplace for people to manage their genetic data.

Church hopes that, by being an intermediary between regular consumers and pharmaceutical companies, it will lower the “access barriers to genomic data” and solve “one of the primary roadblocks” – ie privacy concerns – that is “preventing personalized medicine becoming a reality”.

Though still early days, Cassandra Sinclair, the former global client lead at Wunderman Health who is now president of North American pharma at Grey Group, explains that her previous agency was using some of the data that comes from 23andMe and Ancestry for marketing purposes.

She says: “It is propensity data that’s been scrubbed. It is Hipaa (Health Insurance Portability and Accountability Act) compliant and would not allow anyone to trace it back to an individual. It allows us to know, based on a pool of data on a particular group, whether there’s a greater propensity for a disease. Then, based on that, pharma companies can create ‘personalized’ content to talk about the risk factors associated with that disease.”

People’s genetic data then, from how it might influence the drugs companies produce to the kind of marketing material that is created, is very much seen as a gold mine.

“We want the best of connectivity and sharing, but applied in the most rigorous and efficient way, says Bainton. “As humans we face big questions in terms of the sustainability of healthcare. How do we do it when we’re all getting older and older and accumulating ill health along the way?

“These problems require different stakeholders to work together – that’s where you get better solutions,” he surmises. “That genetics companies have signed up to best practices and are looking at privacy and transparency and being a bit more regulated is a step in the right direction.”