The foolhardy – or not – moment I delivered the coup de grace to my biometric privacy

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Photo by Drew Hays on Unsplash

You know how some people seem particularly tasty to certain insects?  Mosquitoes utterly adore me but they ignore my sister-in-law.  My daughter returned from a whole week at summer camp completely tick-free, but her dad went for a four-hour walk in the same locality and found himself picking off six of the little blood-suckers.  And while my siblings seem comparatively nonplussed about our ancestors, I have been thoroughly bitten by the genealogy bug and will happily while away the hours tracing family lines, particularly when I’m visiting my parents and can dig into the rich treasure trove of family photographs and documents my mother has collected over the years.

If this seems a little middle-aged, well, I guess I am getting up there in years, but hey, I’m not alone.  Everybody needs a hobby, and a few years back it was reported that researching your family history is one of the most popular leisure pastimes in the United States, coming second to a similarly staid-sounding pursuit, gardening.  Genealogy websites are apparently nearly as popular as online porn, which is, well, very popular indeed.  And like porn, it can be quite addicting – so much so, in fact, that after a while I found that the boxes full of photographs and the family-tree websites weren’t doing it for me anymore.  I needed a stronger hit, a more exhilarating high, and that meant only one thing.  I needed to spit in a tube, and I needed it bad.

Although I live in the UK, I was visiting the US, and so I chose a local dealer to feed my craving – Ancestry.com.  Just $60 and a couple of business days later, an exciting, compact little box arrived in the post.  Keenly aware that I was veering dangerously close to being part of the 91% of people who don’t read terms of service before they sign up, I was nevertheless in instant-gratification mode and scanned the T&Cs in some haste.  I did pause briefly before returning the postage-paid box full of biometric data, recalling a 2013 research study that asked people to estimate the worth of their browsing history.  About as much as a Big Mac, they’d responded.  Browsing history might tell you a lot about a person, but what worth did I place on the ultimate font of information about an individual – my DNA?

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It was only after the box of spittle rattled down into the bottom of the postbox that I started to ponder it more deeply.  I did a bit of Googling and instantly encountered the scaremongering.  What DNA Testing Companies’ Terrifying Privacy Policies Actually Mean, read one Gizmodo headline, and I felt a tremor of unease. Unsurprising, really.  We’re quite concerned with privacy these days – rightfully so – and what could be more unique and personal to me than the genome that I’d just entrusted to the US Postal Service, an ancestry website, and any third-party researchers with whom the latter might be partnering?

When I read the comments below the headline-grabbing articles, though, there were some measured and well-informed points that made me feel considerably less wobbly.   If my anonymous genome information were available to researchers,  I thought – or indeed, to anyone – how meaningful is this to me?  How might it affect me?  Is this the kind of privacy I really care about?  The worst-case scenario I could imagine in the here-and-now is that a data breach might allow my personally identifiable genetic information to leap the confines of Ancestry.com and find its way into the databases of, say, health insurers.  Even this unlikely scenario doesn’t bother me much, since I live in a country with universal health care.  Pre-existing conditions or genetic vulnerabilities don’t matter for my access to treatment.  (Thanks, NHS!)   Well, you might argue, even if there’s little or nothing in the way of present-day dangers, perhaps this is one of those situations where I’ll only realise the implications in the future, down the line.  Maybe some horrific sci-fi coda will cap off this tale, the story that began the moment I relinquished the most personal of my personal data, for a mere song, just because I’d been bitten by the genealogy bug and wanted to satisfy my curiosity in the moment.

But the thing is…I remember listening to a series of podcasts about privacy a few years back, and there was one that made a particular impression on me. When we refuse consent for our medical information to be aggregated and used in research, the speaker said, everyone loses.  The more genomes we have on file, the faster and more efficiently researchers will find treatments and even cures for all manner of human ailments – cancer, Alzheimer’s, heart disease.  I can’t find the podcast now, but it could easily have been by Yaniv Erlich, a geneticist and ‘white-hat hacker’ at Columbia University.  His Tedx talk kicks off in the same scary vein as the article mentioned above.  Look what we did in my lab, he says, we took one person’s anonymous genome.  We mixed in a paltry handful of demographic facts associated with that genome, and utilising a big genetic database, look what happened: hey presto, we narrowed a pool of 300 million Utah residents to just one man.  That’s three hundred million to ONE. As you might expect, certain members of the audience looked rather horrified.

But hang on a second, and watch the video all the way through.  He shows a photograph of a young woman with a rare congenital medical disorder, a woman whose life has been transformed due to the genomic information of thousands and thousands of individuals.  I think of my friend Lucy Watts, currently on the hunt for a diagnosis for her incredibly rare and mysterious disorder – a diagnosis that could be of inestimable value to her sister and any future children she might have.  Without large genetic data banks, the answers she seeks wouldn’t be possible at all.

So when I try and imagine any real, meaningful consequence to my genetic information being out in the world, I don’t come up with anything.  But I completely understand how, combined with millions of other genomes, my genetic information could help others, how I could contribute in some small way to medical science.  In other words, my genes may be uniquely personal, but I actually don’t consider it sensitive. I don’t consider it ‘private’. If Ancestry.com wants to share my anonymous genetic information with third-party researchers, as may be allowed by its ‘terrifying’ privacy policies, well, by all means, guys, terrify me.  And hurry up with my ancestry information while you’re at it, because I’ve got a genealogical itch I need to scratch.

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