The risks involved in DNA family searches

But what exactly are we signing up for when we send off our DNA for genealogical analysis?

Ballarat mum Tracey Van Gaans, 47, grew up in a loving family but always knew she was adopted at birth. Tracey wanted to know her biological parents and was thrilled to meet her mother when she was 18 years old. But there was another missing piece of the puzzle she would spent many decades trying to find.

“I always wanted to know who my father was,” she says. “He’s not listed on my birth certificate and my biological mother was reluctant to reveal too many details for various reasons.” After years of futile searching, Tracey’s best friend told her about AncestryDNA tests and suggested she take one to see if she’d connect with relatives on her paternal side. “I said, ‘OK, I’ll do it. What have I got to lose?’”

USING DNA TO TRACE YOUR ANCESTRY

Tracey is just one of hundreds of thousands of Australians who have chosen to do a genealogy DNA test in recent years. Relatively affordable, easily accessible online and requiring just a small DNA sample of saliva or a cheek swab, it’s easy to see why direct-to-consumer (DTC) DNA genealogical tests are proving so popular in Australia.

Genealogically-specific DNA tests available for purchase in Australia and New Zealand include Family Tree DNA, 23andMe, AncestryDNA, MyHeritage DNA and Living DNA and all promise to provide ‘origin’ estimates of your ancestry from more than 350 ethnic regions around the world. Some can even connect users to a comprehensive database of other users to potentially uncover unknown relatives as well.

“I think it’s a market driven by curiosity … we want to understand ourselves and this test gives us a little more insight into who we are and connects us with some of the enduring cultures of the world,” says Brad Argent, Senior Director of Ancestry’s International Programming. “It can be transformative. I’ve watched people get that email, open it up, read their genealogical results and become someone else entirely.”

But that’s not to say everyone who takes one of these tests will have a positive experience and Mr Argent says it’s important for people to understand that they’re not just taking a test exploring their own DNA, but that of their entire family and what’s revealed has the very real potential to result in familial discord or rejection.

“One of the things I tell people to do before they take the DNA test is tell their family they’re taking one and have a conversation about it,” he says. “Because we all have a past and we like to think we’ve moved on but when someone in the family takes a DNA test it does have the potential to resurface.”

Not only does he now have Tracey in his life, but Peter is now getting to know his grandkids.Source:Supplied

THE MISSING PIECE OF THE PUZZLE

Tracey bought an AncestryDNA kit online, returned her vile of saliva and then waited anxiously for her results, not yet aware of just how significantly it would change her life. “I was thrilled to be matched up with several people on the Ancestry database; one in particular, his name was Luke and he was my second cousin,” she says. Tracey contacted him about her search for her father and he was able to help her. “Luke said he thought my father’s name was Peter and that he was on Facebook!”

From Peter’s public Facebook profile, Tracey collected enough information to locate his phone number via the electoral roll. “I was shaking that first time I rang him … but he didn’t pick up. When I tried again the next day, thank goodness, he answered,” she says. “If it’d been two days later he would’ve moved house and we would’ve missed out!”

Peter and Tracey were absolutely thrilled to find each other. “He told me he’d searched for me, too,” Tracey says. “It was just like a miracle … when I tell people my story they think it can’t be true, but it is true and it’s thanks to a DNA test.”

Tracey, Peter and four of his ‘new’ grandkids.Source:Supplied

PRIVACY CONCERNS

Tracey’s story proves that genealogy tests can be a remarkable tool of discovery for family research. But there are also some serious privacy considerations that consumers really need to be aware of when signing up for a genealogy DNA test.

The Australian Government’s National Health and Medical Research Council (NHMRC) provides consumers with an online resource for understanding DTC Genetic DNA testing with details about these types of concerns.

“It is important to know that while DTC genetic tests can be taken for fun or personal interest, there are factors such as test accuracy and privacy, which you should consider,” the document states. “Companies offering DTC genetic tests are mostly located overseas … Australian law protects your privacy rights for services provided in Australia, but these protections do not apply overseas.”

There’s been a huge outcry worldwide after the world was tipped off to the work of Cambrdige Analytica — who used your data to influence an election. Pictured is the Cambridge Analytica’s office in London. Picture: Daniel Leal-Olivas / AFPSource:AFP

And while a privacy breach is unlikely, it’s certainly possible. Just last month, 150 million MyFitnessPal accounts were hacked in huge data breach and in recent weeks Facebook hit the headlines after it came to light that the data of 50 million users was used without permission by Trump-affiliated data-mining company Cambridge Analytica.

And while unauthorised access to your email, Facebook account or even credit card details can prove unsettling and inconvenient, it’s certainly not as potentially damaging as unlawful access to your complete DNA genome.

Ultimately, when you sign up to do a genealogy DNA test, you’re not just giving companies access to, and guardianship of, your genealogical information but also the raw data for your entire DNA that, by default, you then grant third parties to use for ongoing scientific research.

Your DNA is your identity and it can reveal some pretty specific and potentially damaging information about you, such as genetic predisposition to certain disease. If this information falls into the wrong hands during a serious privacy breach, it can potentially be used to discriminate against you.

GENETIC DISCRIMINATION

Late last year, Chinese authorities were reported to have collected DNA samples from millions of residents of the Xinjiang province under the guise of a free healthcare program, which, according to Human Rights Watch, provided data that could be used for surveillance and discrimination in the future.

“DNA information is highly sensitive and can facilitate a wide array of abuses if it is collected or shared non-consensually,” the organisation said.

And while we enjoy vastly superior privacy protections here in Australia, our laws still lag behind those of the European Union and the United States, for example, who have had sanctioned genetic non-discrimination legislation in place for over a decade to protect their citizens from blatant abuses of power and discrimination such as those happening in China.

But even with legislative safeguards in place, there are still several potential uses for the science that conjure significant ethical dilemmas, such as the use of ‘Familial Searching’ to solve serious crimes. Familial searching allows investigators to search DNA databases to identify the close relatives of an offender, which may implicate people in crimes simply by their genetic relation to the perpetrator.

Thousands of people are now paying private companies to track their DNA, but there’s huge risks.Source:News Limited

In its terms and conditions, Ancestry states: “We may share your Personal Information if we believe it is reasonably necessary to comply with valid legal process (e.g., subpoenas, warrants); enforce or apply the Ancestry Terms and Conditions; protect the security or integrity of the Services; or protect the rights, property, or safety, of Ancestry, our employees or users.

“If we are compelled to disclose your Personal Information to law enforcement, we will do our best to provide you with advance notice, unless we are prohibited under the law from doing so.”

Currently, Australian law dictates that life insurance applicants must disclose all known genetic test results if requested by the insurer, which has resulted in several high-profile cases in which Australian life insurance companies have denied cover for consumers with genetic predispositions to certain medical conditions.

This includes that of a 27 year-old Australian man reported by the Australian Medical Journal whose mother had suffered from bowel cancer. He had been encouraged to take a genetic test and when he discovered he carried a gene that increased his risk of also developing bowel cancer, he was legally obliged to disclose these results when applying for life insurance.

He was denied cancer cover as a result and took his case of discrimination to the Human Rights Commission and it was only then that he was granted full life insurance by the insurer.

However, recent advancements have been made after Parliamentary Inquiry into Life Insurance last week recommended Australian life insurers no longer be able to use predictive genetic test results in underwriting.

Helen Troup, Managing Director of CommInsure at the Commonwealth Bank of Australia appearing at a Joint Committee at Parliament House in Canberra. Picture Kym SmithSource:News Corp Australia

Monash University’s Public Health and Preventive Medicine’s Head of Genomics, Dr Paul Lacaze, welcomed the findings, stating in the University’s medicalxpress.com publication last week that it was a significant step forward for Australia. “The government now need to follow this with action to implement the proposed ban and a new regulatory regime,” he said.

WEIGHING UP THE PROS AND CONS

Informed consumers know, however, that they can request their DNA data and sample are destroyed after analysis, or they can opt out of taking part in ongoing scientific research, ensuring they receive all the benefits of Genealogy DNA testing without the potential headaches.

“It’s really important to read the terms and conditions and know your options and rights because this is your genetic material, and you need to know what you are accepting as the basis of this process when you do one of these tests,” Mr Argent says.

“If anybody is concerned about taking a DNA test, and the security around the current process, then they shouldn’t take a DNA test, it’s that simple.”

Tracey says she did have initial concerns about privacy surrounding her AncestryDNA test but after weighing up the pros and cons, she felt it was worth giving it a go, regardless. “I was a bit sceptical at first because you don’t really know what they can do with your information down the track,” she says.

“But I was just so desperate to find my father that I was prepared to take the risk. Only good has come from it for me. It’s enriched my family’s lives … it’s been a blessing, really.”

News Pty Limited Copyright © 2018.