DNA Is An Asset, Why Give Yours To Ancestry Websites For Free? Data Sold To Big Pharma [View all]

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'Your DNA is a valuable asset, so why give it to ancestry websites for free?' DNA testing companies are starting to profit from selling our data on to big pharma. Perhaps they should be paying us. The Guardian, Feb. 16, 2020.

The announcement by 23andMe, a company that sells home DNA testing kits, that it has sold the rights to a promising new anti-inflammatory drug to a Spanish pharmaceutical company is cause for celebration. The collected health data of 23andMe’s millions of customers have potentially produced a medical advance – the first of its kind. But a few weeks later the same company announced that it was laying off workers amid a shrinking market that its CEO put down to the public’s concerns about privacy.

These two developments are linked, because the most intimate data we can provide about ourselves – our genetic make-up – is already being harvested for ends we aren’t aware of and can’t always control. Some of them, such as better medicines, are desirable, but some of them should worry us. Launched in Silicon Valley in 2007, 23andMe offers genetic tests “direct-to-consumer” (DTC) – that is, independently of any healthcare system. The company collects genetic information about people, as well as information about their health, behaviour and much more besides. This allows it to identify links between certain genes and, say, a disease, and then – through its therapeutics division – to develop drugs that interfere with the action of disease-causing genes.

Companies such as 23andMe have proliferated over the past decade, feeding people’s hunger to know who and where they come from, and what diseases their genes might predispose them to. Over that time, it has gradually become clear that the main source of revenue for at least some of these companies comes from selling the data on to third parties. Some DTC companies, such as 23andMe, are transparent about the sharing of data. When you sign its contract, you are asked if you consent to your data being used for research, and roughly 80% of 23andMe’s customers do. Other companies are less forthcoming.
A 2016 survey showed that only a third of the 86 companies then offering genetic testing services online explained to customers how their data would be used.

The trouble is, a health tech company is not a doctor. It doesn’t take the Hippocratic oath, and the patient – or customer – is not the person whose wellbeing it is most concerned about. It is not obliged to talk you through its terms and conditions, and it could change these at any time – though in some jurisdictions this may void your consent. You can also withdraw your consent at any time, but that withdrawal generally takes time to come into effect, and in the meantime your data may have been passed on – after which it is harder to get it back. Erasing it entirely is harder still.
And what rights do the customers have over the product developed from their data? DTC companies are far from the only ones collecting sensitive data about you. National health systems, health insurers and, increasingly, social media providers are too...

More, https://www.theguardian.com/commentisfree/2020/feb/16/dna-hugely-valuable-health-tech-privacy