Where does your DNA data actually go?

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What may seem like a simple process to find out more about your family history could deliver a lot more than you bargained for.

The thrill of finding out your family background and piecing together your lineage are enticing increasing numbers of people to take online DNA tests.

For sites such as Ancestry.com and 23andMe, business is booming. The number of people taking DNA tests more than doubled in 2017 and has now surpassed 12 million according to industry estimates.

For those who are curious, it’s now all too easy to discover the unknown. Spit into a tube or send off a swap and you can have your results back in weeks.

But who owns your DNA after you’ve sent it off to be tested? Jane Tiller, Monash University lawyer and genetic counsellor, warns that Australian laws around ownership of DNA are very unclear.

“There are some interpretations that people have about what might happen in certain scenarios, but there is no legislation in Australia on that,” Tiller says.

“And there's another layer to it when you're sending it off to another country, what does that mean if it passes Australia's borders and it goes to another country?”

And what can companies do with your DNA after you’ve handed it over? That’s where things can get even murkier according to  Tiller.

“I think people don't always realise when they check a box to say yes, we'd like this to go to research that it's actually going to a pharmaceutical company for profit rather than maybe to a hospital for cancer research,” Tiller says, referencing DNA company 23andMe who signed a large deal with pharmaceutical company GlaxoSmithKline.

“We know that there are other relationships with researchers and other third parties that companies can send data to or can share data with and people don't always know exactly what will happen with their data.”

Be prepared

It’s not just where your DNA ends up that you need to be wary of. Tiller says people need to be aware of what they might actually discover.

“People often don't go into this thinking am I prepared to find out about things that are going to shock me?” Tiller says.

“Am I ready for that, and when you go into more of the health testing, you know, are people prepared to find out about things that may be related to disease, that maybe aren't treatable?”

Zach
Zach wasn't expecting to find out the level of detail he did when he used DNA sites to look into his health history. Photo: Insight
Insight

Zach, 24, was conceived by a sperm donor and used a DNA site to try and find out more about who his father was. But when he used third party websites to delve into his medical history he admits he got more than he bargained for.

“It [third party website] links your genetic information with genes that correlate with certain facets through studies, like obviously brown hair, blue eyes, white skin, but then like 30 times more likely to go blind by the time I get older,” he says.

“[I’ve] either got schizophrenia genes or cancer of a bowel, liver, prostate, which is all good to know but it's a lot to take in in one day.”

Tiller says the takeaway from all of this is to be prepared for anything, and always read the terms and conditions thoroughly, no matter how long they are.

Source SBS Insight

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