Allan Jankie and his sister Gina wait nervously at a Melbourne Airport arrivals gate, scanning the passengers filing off.
Gina smooths her dress and adjusts her half-rimmed reading glasses.
They are both anxious about this meeting. A momentous introduction to a Mr Roy Hiltermann of Rhode Island, USA.
Allan and Roy have been sharing video calls every weekend for the last two years. The strangers' stilted conversations about their past have now grown into casual chats about their week, but Roy has only been a face on a screen.
Now here he is in the flesh. The Jankie siblings rush at him.
"Hey, big brother!"
Roy is their newly-found big brother, who at five-and-a-half feet, they are towering over as they envelop him in a group hug.
There are tears and bewilderment until another sibling, Jeffrey Jankie, arrives. He crash-tackles Roy and lifts him into the air. Big kids making up for lost time.
"So amazing, you're such a gift," says Gina.
"We didn't know you existed. And now look, there's four of us!"
She takes off her glasses and sits them on the bridge of Roy's nose.
"These are your father's glasses. We want you to look through his lens."
Roy finally gets to see the world of a father he never knew.
'Be careful what you ask for. You might get it'
Roy and Allan are half-brothers.
Between 1945 and 1950, their father, Adek Jankielewicz — a concentration camp survivor — lived in a displaced persons camp in the German town of Augsburg.
While in Augsburg, Jankielewicz spent time with a woman called Hilde Felsner, before leaving for Australia in March 1950. That same month, Felsner would give birth to their son, Roy.
Growing up, Roy did not know who his father was, let alone that he had brothers and a sister. But that all changed around Christmas 2020 when he submitted a saliva sample to a direct-to-consumer (DTC) DNA service.
Likewise, Allan had no idea Roy existed, until his own DNA sample — sent about the same time as Roy to the same DTC DNA service — flagged a 26 per cent DNA match with a user called "Hiltermann".
"And I'm sitting here and thinking, 'Well, if my second cousin is a 4 per cent [match], what on earth is a 26 per cent shared DNA?" Allan says.
"They say it's 100 per cent accurate that you and he are either a grandparent, a grandchild, an aunt or an uncle, a niece or a nephew, or a half-sibling."
Roy says the bombshell has been bittersweet. He now has three new siblings. But he's also questioning everything he thought he knew about his life.
"It just hit me like a tonne of bricks. You know [that saying] be careful what you ask for [because] you might get it. I always wanted to know who my real father was. And now I know."
Roy and Allan's story is a familiar one. Across the world, there are accounts of people submitting their genetic samples through DTC DNA kits, only to discover their family secrets.
The industry — which includes AncestryDNA and other DTC DNA kits such as 23andMe and MyHeritage — offers to do this by pooling DNA data to connect users with genetic matches.
By 2021, more than 30 million users had submitted a commercial DNA test.
While there are plenty of feel-good stories born out of the DTC DNA industry, what's less clear is who exactly can access those millions of genetic samples, and what they can be used for.
'The most egregious privacy abuses'
In 2021, US-based privacy researcher Bill Fitzgerald decided to track how the data flowed across those DNA businesses and beyond.
He collected his dog's drool and sent it off to the five biggest names in the consumer DNA business: 23andMe, AncestryDNA, CircleDNA, GenoPalate and MyHeritage.
"I was kind of hoping that I would get this great ancestral story back about what the family history was and could share that with my dog," Fitzgerald says jokingly.
Fitzgerald found that by merely signing up, third parties like Google, Microsoft, Facebook and Yahoo start watching users.
These "who's who of ad tracking", as Fitzgerald calls them, are then mining users' consumer data, like contact information and payment information, and can see if users have filled out any health surveys.
As for genetic data, Fitzgerald says companies generally do a good job of protecting it, as there would be consumer blowback if they did not.
However, that very private data remains open to third-party access, at the tick of a box — the "research" box.
A closer look at the fine print reveals just how much information users can give away to third-party companies without realising it.
And that applies to a lot of users. At one DTC company, 80 per cent of users have ticked that research box.
When Allan Jankie submitted his sample in 2020, he opted to allow his genetic data to be used for research. But he's not concerned.
"I have no idea [what it means] and I've never even thought about it," he says. "Good luck to them if they can make any use of it."
Fitzgerald says most people might assume that allowing their DNA to be used for "research" means their genetic information might be used for purely scientific or medical pursuits.
But that might not be the case.
It also means companies can profit from it.
In 2018, 23andMe — one of the largest consumer DNA companies — sealed a $US300 million deal ($448 million) with pharmaceutical giant GlaxoSmithKline, which gave the company exclusive access to the DNA database. The company used the information for Parkinson's disease research.
'Worth more than oil'
In Australia, genetic data is protected as "sensitive information" under the Privacy Act, but that does not mean it is untouchable.
Within the privacy policies of DTC DNA companies, just who can access your genetic data is often murky and unclear.
Malcolm Crompton is a former Privacy Commissioner. He says privacy policies are designed to be bamboozling.
"I can give you the executive summary of almost every privacy notice you've ever been, allegedly, reading. It is as simple as this: 'We're going to collect everything about you that we can,'" he says.
"'We're going to keep it forever. Use it for anything. Share it with anybody and add to it any other information that we can collect, in any way.'"
Crompton says personal information — like that in our DNA — is "the most valuable information in our economy".
"It's worth more than oil."
He says he is amazed people are handing over their DNA data, often without a second thought.
"Are we protecting this stuff that way on the balance sheets, the way directors think about personal information, the way the stock markets value companies on the personal information they hold and use?"
"The answer is a wildly resounding no."
'Genetic informants'
Inside the forensic labs and police investigation rooms, there is hope that genetic information can be used for more than just boosting company profits or compromising privacy.
Consumer DNA information could be a game changer for police investigators and cold case forensic teams eager to mine the data to help in their own detective work.
And it is not hard to understand why. Investigation targets — suspects or unidentified remains — do not even need to have their own DNA uploaded to be identified.
All it takes is a family member — even a distant relative — to have uploaded their DNA to get a match.
And that also means people handing over their DNA now, might identify grandchildren or great-grandchildren down the track.
One study has noted that only 2 per cent of the US's European descendants need to be on a DNA database for almost anyone in that group to find a third cousin.
It raises the prospect of "genetic informants" — people who may unwittingly identify family members now or in the future, by sending away their own genetic sample.
This area is known as forensic investigative genetic genealogy (FIGG), and there is a lot of interest in Australia.
Molecular Biologist Dadna Hartman works at Victoria's Institute of Forensic Medicine, where she sees the promise of this genetic information.
In cases where every other avenue has been explored, consumer genetic information may finally give the dead a name.
"This is now providing us with a 'last hope', if you like," Dr Hartman says.
"Where we've reached the end of the line with regards to what DNA analysis can offer with our conventional testing, and [where] we've tried every other avenue to identify these individuals."
At the moment, Australian investigators can only conduct familial genetic matching for the most serious crimes and only by using the national crime database, comprised of DNA samples found at crime scenes and from convicted offenders.
The database includes around 1.7 million profiles, which is well short of the world’s biggest commercial DNA database, which has around 23 million profiles.
The first steps towards using commercial databases are already underway.
Nathan Scudder, coordinator, biometrics for the Australian Federal Police, says there are already discussions going on about applying FIGG to Australian cases.
"This technique is just over the horizon, it's not far away now," he says.
"There's always discussions, particularly with the companies that are already offering the service, and we need to make sure that the way that they're implementing these capabilities, down to the security around their databases and the way in which the algorithms are working technically, will support our casework.
Tomorrow's problem
While the nature of consumer kits raises questions about data safety and genetic surveillance, for Allan Jankie, the experience of DTC DNA kits has been positive.
"There's no question [that] without DNA, Roy and I would never have connected. It's as simple as that," Allan says.
Despite his family's Holocaust history and knowledge of the horrors of genetic discrimination, Allan is not fearful that these kits could one day be repurposed as instruments of injustice.
He says, as far as he sees things now, the positives of these kits outweigh any potential negatives.
"I'm a believer that if you're worried about what's going to happen in the future, with either governments or enemies, you'll never do anything, because things that are invented today, that benefit you today, can always be used for evil down the track," he says.
"And if you're worried more about the evil down the track, you won't actually do anything today."
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