Hidden danger of testing your DNA
THE controversy surrounding Facebook in recent months has raised huge concerns about the security of our data.
While the data scandal raised valid global concerns about privacy online, many of us are still happy to hand samples of our genetic make-up over to big companies, either unaware or unfazed by what it might be used for.
The alleged Golden State Killer brought the implications of DNA testing back into the spotlight.
Joseph James DeAngelo was arrested after genetic information listed on a large, open-source genetic database called GEDmatch connected him to a series of rapes and murders in the '70s and '80s.
A distant relative of his had used the genealogy site to learn more about his family history, little knowing it would later be used in a murder investigation. It has raised concerns over what genetic testing might be used for.
DNA tests have gained popularity in Australia over the last few years, serving as festive gifts and fun explorations for people wanting to know the ins and outs of their family history and ethnic make-up.
Family Tree DNA, 23andMe, AncestryDNA and MyHeritage DNA are among the testing services that say they can give you an insight on your origins.
But when you ship off your saliva to get your data, who actually owns your DNA, and what can they do with it?
TRUTH ABOUT DNA TESTING KITS
Jane Tiller, ethical, legal and social adviser in public health genomics at Monash University, told news.com.au that DNA tests can lead to genetic discrimination.
"One of the concerns is people don't know what will happen with their data," Ms Tiller said. "They're not always thinking about protecting their privacy when they send this information off."
She noted that, while it's specified in the terms and conditions that DNA samples can be stored and shared, people don't necessarily read these before accepting them.
In some cases, this can have serious consequences. While health insurance is protected in Australia, life insurance is not.
Unlike in many other countries, Australian insurers can increase premiums or exclude life insurance cover entirely for certain conditions, such as cancer.
"If you had a test and discovered you have a mutation in the breast cancer gene - BRCA 1 or 2 - you will then likely have difficulty getting life insurance cover, and they will probably increase your premium significantly," Ms Tiller said. "It's the same thing with lynch syndrome, which increases the risk of bowel cancer.
"This becomes a real problem clinically with families that have this gene running through them, as some people choose not to have important testing because they are afraid of the insurance implications."
'THE PRICE I PAID FOR GENETIC TESTING'
Edwina Sawyer, 50, took a genetic test over a decade ago, but she's still paying the price for it today.
The Sydney mother-of-two told news.com.au that prior to taking the test, she was warned she should apply for life insurance, in case the results influenced her ability to do so later.
She ended up testing positive for Lynch syndrome, an inherited disorder that can increase the risk of bowel and several other types of cancer. Over the next 10 years Ms Sawyer found herself either getting knocked back by insurers or having her premiums dramatically increased.
It even affected her travel plans.
"I pay a massive premium every time I get travel insurance - I have to apply separately to the rest of my family," she told news.com.au. "I am also not covered by any existing complimentary insurance that may come via credit cards. I always do online, you have to declare medical conditions while applying."
Now, Ms Sawyer says she would be more hesitant to recommend genetic testing.
"I would be less likely to recommend testing based on my own personal experience. That in itself is extremely counter-productive in that genetic testing can be the difference between life and death," she said. "Knowledge is power. People should be encouraged to be forewarned about any pre-existing medical conditions rather than penalised for doing so."
Since getting her test results, Ms Sawyer has gone to great lengths to ensure she is in good health. She has an annual health screening - including a colonoscopy and gastroscopy - and had a double mastectomy and hysterectomy upon learning she had Lynch syndrome.
"Is seems unfair that we are penalised here in Australia with regard to insurance, however not Canada, the United States and most of Europe," she said. "People with genetic conditions such as myself go to great lengths to ensure they are in the best health possible. I am the first female in my family with Lynch syndrome to have made it to 50 cancer-free!"
She believes many people have no idea how difficult it can be for people with genetic conditions to obtain life insurance.
WHY GENETIC DISCRIMINATION ISN'T FAIR
In Australia, life insurers are allowed to ask if an applicant is considering having genetic testing, and can then use the results to determine their coverage - a decision not everybody thinks is fair.
In 2013, the Australian Medical Journal noted a case of a man in his early 20s whose mother had suffered from bowel cancer. He took a genetic test and discovered he carried the MSH6 gene, a mutation associated with Lynch syndrome.
He was subsequently denied cover for cancer.
He eventually took the case to the Human Rights Commission and won, with the minor exclusion of any claim caused as a result of a colonoscopy.
Ms Tiller suggested it was unfair to discriminate based on this genetic data.
"First of all, we don't fully understand why people are likely to get cancer," she said. "The hereditary factor isn't the only contributor. We don't always know why some people get it and others don't.
"But also, it just doesn't seem fair. We can't control our genes. This is beginning to affect research, because people are worried about getting involved in genetic research because of insurance concerns.
"At a time when we need to be developing our understanding of genetics, it is really critical that Australians trust they won't be discriminated against."
SHOULD YOU BE WORRIED?
Life insurance premiums aside, DNA testing isn't necessarily something that should concern the average Australian.
"We don't want people to feel like DNA testing is the end of the world," Ms Tiller said. "There are great things about genetic research. We just want people to be conscious of the decisions they make about DNA testing and the implications for their genetic data."
In a scenario where a user's DNA information was hacked, she said the likely answer is that nothing significant would happen - at least in a country like Australia.
In China, by comparison, authorities have reportedly collected DNA samples from millions of residents for the purpose of surveillance.
"In Australia we have legal protections against employers using genetic data to make decisions," Ms Tiller said. "But people globally are increasingly becoming concerned that employers might be able to see what predispositions they have, for example."
She warned that on a personal level, people need to be prepared for unexpected findings, noting you could find out about unexpected paternity or that you're at risk for certain diseases. This information may cause nothing but distress for the individual.
"People just need to be vigilant," she said. "Think about where you're sending your sample, and remember that not all companies are the same or have the same policies or quality control."