Are home DNA kits reliable?
This is what the experts say:
Genetics counsellor and academic Kristine Barlow-Stewart says:
"If people are doing it with the appropriate support it may have some
value, but only if it's done with a GP or a doctor who can reassure you and can point you in the right direction. But these tests are being rolled
out too soon – they are commercial decisions being done by private
companies with financial interests."
Dietitian Melissa Adamski says:
"While genetic testing can provide some information, in many cases it
doesn't provide the full picture. While more education and understanding in
this area is great for patients, it doesn't necessarily have to mean
direct-to-consumer testing, and not straight off the bat."
GP Dr Brad McKay says:
"Gene tests promise the world, but deliver very little. Uninterpretable
results muddy the waters and can even have a negative impact on patient
Home DNA kits don't have all the answers
Associate professor Kristine Barlow-Stewart specialises in genetic
counselling and genetic medicine at The University of Sydney. She says it's
important that people understand the limitations of consumer commercial DNA
"While there's no doubt an organisation like Ancestry and others use good
science, you will get different results from different companies because of
the reference DNA that they are comparing you to," she says. "You are being
compared to the data population they have, which isn't everyone. This is
why you can send your DNA to different companies and get different
When it comes to health DNA testing, Barlow-Stewart says genes don't hold
all the answers or responsibility when it comes to health issues. "Take
breast cancer for example, genes contribute just five to ten percent. The rest
is from something else we don't know."
The same goes for nutrition. "With nutrigenetic variations, the
environment, such as diet, still plays a large role in overall health
outcomes," says Melissa Adamski, who works in private practice as an
accredited practising dietitian and also at Monash University's
Department of Nutrition and Dietetics. "And with weight loss, it's so
difficult to get the full picture from genetics alone, so while genes play
a part, weight is multifactorial and other factors should also be
It's all in the interpretation
While the experts we spoke to agreed that there's plenty our genes can tell us, they all agree that the findings often beget more questions than answers.
Adamski says that when it comes to DNA and nutrition, genes are important but testing doesn't necessarily provide the entire picture."In some cases genetics can play a role in guiding nutrition requirements, and going forward it may mean we have different dietary requirements based on information from our genes," she says. "[So] the current one-size-fits-all government recommendations may need to be tailored to each individual. But the other side of this is that a lot of the time with DNA, the more we dig the more complex it gets and we end up with more questions than answers."
Adamski says a major challenge is finding a health professional best suited to interpreting gene tests. "There's no perfect medical professional to deal with it at the moment."
She says that while dietitians now understand how genes are playing a role in diet and weight management, they're not geneticists, while a geneticist can interpret the results but can't guide you in what to do. "You need a multidisciplinary team. Not all health professionals have the training yet – it's still so new."
Will DNA testing affect your life insurance?
One of the biggest issues to consider before embarking on any health,
fitness or diet-related DNA tests in Australia is that the results may
affect your ability to secure or claim life insurance.
Currently if you have genetic test results, even if they were done online
and where the scientific evidence might be a bit wobbly, you must disclose
that information if it's requested. And any results that could indicate a
risk of disease can be used against you by the life insurers in a variety of ways, from
increasing premiums to denying claims.
In April 2018, a parliamentary inquiry report which looked at the life insurance industry made a recommendation regarding the use of predictive genetic information. They recommended that, in consultation with the Australian Genetic Non-Discrimination Working Group, the Financial Services Council – the peak lobby group for life insurers – assess the consumer impact of imposing a moratorium on life insurers using this kind of information except where it was provided by the consumer to demonstrate they're not at risk of developing a disease.
This recommendation, and the report overall didn't really focus on good
consumer protection. Instead, the onus is on the industry to self-regulate
CHOICE policy and campaigns advisor Xavier O'Halloran says it's concerning
that people don't know the impact of getting these tests done. "For people
who don't know this, it can affect their ability to get life insurance. For
those who do know, there is a huge health risk that they may not want to
get genetic tests done for fear it will impact their access to life
Privacy and your DNA
While some companies offer the option to destroy your data or de-identify
it by removing your name, address and other details, others may require you
to plough through complicated terms and conditions to find out exactly what
you've agreed to.
Barlow-Stewart says sending your DNA to a commercial facility is like
Facebook. "Many of these online testing companies retain the information
indefinitely. You can request that the data is destroyed, but if the
company is overseas it can be hard to do. You need to read the fine print."
claim any ownership rights in the DNA that is submitted for testing. Yet
critics of the update have pointed out another clause that makes it clear
that despite this, the organisation still owns the 'rights' to it.
Confused? That's probably the point.
And while some companies make assurances about de-identifying your data,
Barlow-Stewart says that may not be enough to protect your privacy.
"Even though they say that they are de-identifying your data, there are
concerns about whether you can truly be totally de-identified because there
is a lot of capacity to know hair colour, eye colour and face shape from
your DNA. And if you have a rare genetic condition you are in an even
smaller pool. You may be easily identified despite having your name
Can you handle the truth?
When it comes to the results of your DNA tests, what may seem like a bit of
harmless fun has the potential to be a real headache, particularly when
it's any kind of DNA health testing.
Sydney GP Dr Brad McKay says he's had a few patients come in with DNA tests
relating to health or medication that have caused them stress, even if the
results didn't indicate a specific health issue.
In a recent article for the Royal Australian College of General
Practitioners, associate professor Grant Blashki (who sat on an advisory
committee looking at genomics in General Practice) was quoted as saying GPs
could play a vital role helping patients understand the evidence base,
including developing a 'healthy scepticism' about extravagant claims. "It
is important in advance that patients consider who is going to be assisting
with interpretation once the tests are done," he says.
But genomics veteran Barlow-Stewart says this is easier said than done.
"This is a new field and many GPs are not trained to interpret the data.
Many companies are saying they can put you in touch with a genetic
counsellor but they are overseas, or it's on the phone and there might be
She says GPs often refer patients to a genetic counsellor, but that there can be long waiting times.
"They are going to be sitting waiting and getting very stressed out about
the results. We are seeing a big upswing in people wanting to see genetic
counsellors – and in many cases we are dealing with the 'worried well'."
Skeletons in the closet (like, literally)
Police investigators in the US recently arrested a serial rapist and
murderer who had evaded detection for almost 40 years. And it was all
thanks to a DNA test done by an unsuspecting relative who was interested in
When a relative of the alleged "Golden State killer" Joseph James DeAngelo posted their DNA on an open-source genealogical site used by people wanting
to know more about their family heritage, little did they know that police
were painstakingly trying to match DNA collected from crime scenes with DNA
profiles that have been posted in the public domain. Unbelievably they made
a match between the two, and as a result DeAngelo has been charged with 12 murders.
While most of us probably won't encounter this situation, it's a timely
reminder that if you're considering DNA testing of any kind you need to be
prepared for the results. From unknown siblings and dubious paternity
rights to the knowledge that you might develop serious health issues, these
are all possibilities once you sign up for a $99 test.
Upselling your genes
As more genetic tests become available, some online DNA testing companies
offer the option of holding on to your data and letting you know when there
are more opportunities for new tests and refined results.
Both MyDNA and Ancestry state in their terms and conditions that you'll be
sporadically contacted with updates when more information becomes
available, on anything from newly discovered relatives to new results on
health issues. While this sounds helpful, some users may get more than they
With organisations like 23andme in the US now offering ancestry testing as
well as health testing, it's easy to see how customers can be upsold in the
future. At the time of writing you can order a combined ancestry and health
kit for $139 USD (plus another 30% off and free gift wrapping for Fathers
Day) which offers a massive 75+ health reports that range from genetic
health risks to "Carrier status" for inherited diseases. Finding out you're
the genetic carrier for cystic fibrosis is a long way from wondering which
part of Europe your dad's family came from.
And even without the genetic upselling, engaging with these companies is a
gateway to good old-fashioned upselling too. Since we sent a DNA test from
CHOICE to Ancestry we've received a number of emails offering discounted
tests for family and friends with the tagline "the more you test, the more
you can discover. Each additional family member you test can reveal new
details about your family story".