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Should DNA kits come with health warnings?

While at-home DNA testing kits are touted as a savvy solution for the genetically curious, research shows the findings can hit harder than expected. So, do manufacturers owe their customers a caveat?

By nature, your DNA is the most personal thing about you. Containing genetic information passed down from your parents, there is no greater marker of who you are than your genome. For that reason, many are understandably curious to find out more – for clarity around their family lineage, or to know what they’re up against when it comes to their health.

But while DNA kits are useful and often entertaining, what happens in the scenario where someone unexpectedly discovers details about their family or health they don’t like? Or wishes they never knew the truth about their biology in the first place?

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It’s a thorny issue that’s becoming even more relevant in our information-obsessed age. So what motivates us to go digging?

In 2019, Professor Susan Moore from Swinburne University of Technology, along with Professor Doreen Rosenthal AO from The University of Melbourne, carried out research on 775 hobbyist family historians to examine the motivations for investigating ancestry. The study found that while nearly all respondents experienced joy or pride at their results, nearly two thirds (63 per cent) also experienced strong negative emotions. “There seems to be little attention given to the ethical boundaries around home DNA testing kits, or preparing people for the potential emotional and psychological risks that may be evoked,” says clinical psychologist, Dr Alissa Knight.

“No matter what type of information is revealed, this type of unexpected discovery will trigger some type of emotion for most people, whether that’s sadness, happiness, anger, shock, anxiety or panic. Depending on the individual’s level of emotional resilience, this could have detrimental consequences.” Moore and Rosenthal identified five common triggers from at-home DNA kit findings; ancestors behaving badly, ancestors treated cruelly, sad stories, family secrets and betrayal, and moral dilemmas caused by the findings. Yet nowhere in these at-home kits does it provide a warning that a person’s discoveries could impact them long after the report lands in their inbox.

Accredited testing facility, DNALabs, on the other hand, does issue a health warning – on their pamphlet and application form. “The result of DNA testing may have a significant impact on the people being tested,” it reads. “We recommend you consider these matters carefully and discuss them with a trusted healthcare professional.” According to spokesperson Emma Solly, “Testing is highly emotive and can change peoples lives.”

Some testing kits also analyse bioinformatics, genetic predispositions and personality traits. Sophisticated versions of these tests claim to accurately indicate risk of developing conditions such as Alzheimer’s and Parkinson’s, as well as the BRCA gene, linked with breast and ovarian cancer. While arming people with health information can’t be undervalued, experts say results are often hard to interpret without proper guidance, and can open the door to potential misinterpretation.

The other thing to note? A genetic predisposition isn’t as dramatic or certain as it seems, and lifestyle factors can alter whether it actually comes to fruition. “It’s a statistic based on probability,” explains Dr Knight. “It doesn’t necessarily mean it will happen, because no genetic testing is 100 per cent accurate.”

So do you opt for enlightenment or blissful ignorance? Of course, it’s a personal choice. But anyone considering delving into their genetic make-up should be adequately warned. After all, once Pandora’s box has been opened, it can be tricky to shut.

How to deal with a health curve 

Be kind to yourself 

If you’ve discovered information you weren’t expecting, this is a time to be extra kind to yourself, suggests Dr Knight. Inject some self-care into your routine, whether that’s yoga, running, the gym, whatever works.

Carve out space 

Keep things in perspective. You may need to create some distance from the results for a while, until you’re eventually ready to read them again – if ever. The timeline is completely up to you, adds Dr Knight.

Reclaim your power 

Despite the results, remember you choose what information you accept, and what you do with it. Lifestyle changes like diet and exercise can have a positive impact on reducing the risk of many genetic conditions.

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