BROUGHT TO YOU BY BUPA GLOBAL
Recently, there has been a huge rise in popularity and availability of home genetic (or DNA) testing kits. There are quite a number of personal DNA products available on the market, offering a range of services, with the ability to analyse your risk of developing medical conditions, map your ancestry, and even analyse how your body will respond to certain lifestyle factors.
But apart from being able to post about it on social media, is it all good? Are there any risks that you need to be aware of, and what are the benefits? We’ve taken this opportunity to ask Dr Petra Simic, clinical director of health clinics at BUPA UK, about what we need to think about before hopping on the home DNA testing bandwagon.
There are lots of different home DNA testing kits available. In terms of your health and wellbeing, they can be used to:
These kits are largely purchased online and are run by companies based in the UK, USA, and further afield.
It’s simple enough: home DNA tests involve collecting a sample of your DNA. You’ll usually do this yourself using a swab, which you swipe along the inside of your cheek. After you’ve taken the sample, it is sent by post to a laboratory for testing. Once at the laboratory, your genetic material is mapped and analysed against a series of known genetic combinations and patterns.
There’s no doubt that home DNA testing has great potential to enhance health and wellbeing as we know it. It may help to give a more personalised experience for patients and consumers and empower them to make better, more informed choices about their health. Insights from DNA testing may also help people to actively change their behaviour—especially before more serious problems develop.
Home DNA testing is an emerging market which champions new technology and insight, and there’s often a period of learning and evolving. By being aware of the current challenges, you can navigate the market as effectively and safely as possible.
As with all scientific developments, there are two sides to the coin, and it’s important to go into it understanding the possible liabilities and pitfalls. If you’re thinking about doing a home DNA testing kit, Dr Petra Simic suggests that you consider the following.
When buying a home DNA kit, it’s important to think about the information that you’ll receive. Being told that you’re genetically predisposed—that is, more likely to develop—a medical condition can be difficult to swallow. Ask yourself, “Am I prepared for what the test might tell me?” Remember to evaluate the risks that this information poses to both you as an individual, and on other family members too.
But equally importantly, keep in mind that being genetically predisposed doesn’t necessarily mean that you’ll be affected. There are lots of other factors at play, such as your environment and lifestyle choices. But if there’s a chance that your home testing kit can expose you to this information, it’s important to be prepared.
Dr Simic’s advice would be to first check what the kit detects. If you could be told that you’re at increased risk of a medical condition, make sure the company providing the kit also offers counselling. Counselling can help you to make an informed decision before taking the test. It can help you to consider the risks and benefits, and decide if you want to go ahead with it or not. If you do decide to go ahead with the test, make sure the company can also:
Following the results of your home DNA test, you should also consider the possibility of needing to have further tests and investigations. You’re not going to spend money finding out something might be wrong with your body, only to then sit on your thumbs and ignore it!
Some follow-up tests or procedures may be invasive and cause discomfort or worry. You’ll need to evaluate the advantages and disadvantages of this carefully because being genetically predisposed doesn’t necessarily mean that you’ll be affected.
Of course, there are positives too. For example, home testing can encourage individuals to engage in less ‘risky’ behaviours such as screening, much earlier, to help prevent a condition developing. Testing can also benefit individuals’ future health and wellbeing, by encouraging them to take action, and adopt a healthier lifestyle now.
So again, know the remit of your DNA test, and what action you might be expected to take on the back of it. For any possible actions, ask yourself: “Can I do this and am I ready for it?”
Leading on from the previous point, it’s important to consider if it is possible for you to make a positive change after your results. For example, there aren’t currently preventative measures for some degenerative diseases, like the neurological condition Alzheimer’s disease. Being told that you are at risk after DNA testing can be difficult to process. This may be especially true if you receive this information without any support.
But, there are types of genetic testing that do not pose this risk. These include those that investigate certain lifestyle factors, such as:
It is thought that by understanding these factors, you may be able to eat, move, and thrive in ways that suit you best. Better still, they identify things that you can adopt and change for the better.
As our understanding of genetics grows, so too will the best available research in this area, and possibly our interpretation of it. Lots of healthcare professionals, Dr Petra Simic included, don’t see this as something that should halt innovation in its tracks. Instead, we should view this as the opportunity to advance and develop; to test our current thinking and improve upon it.
It’s thought that there are over 250 different companies already providing home genetic testing, and the market is set to get even bigger. What’s encouraging is that, in addition to innovation, we are also starting to see improvements in regulation to support patient safety in this growing market.
Regulation around genetic testing was once lacking in a way that helped to support the safe growth of genetic testing in the health and wellbeing space. However, in 2017, new regulations were published relating to in vitro medical devices (IVMDs), which includes genetic tests.
The regulation outlines stricter processes to assess these devices before they reach the market, including the evidence needed to support them. IVMDs currently in development must legally comply with this regulation—and by 2022, the intention is that all products will be of this standard. Of course, there are more questions to be answered and work to be done, but overall, these are encouraging advancements.
Ah, the crack in the lens, the fly in the ointment. One other very important consideration regarding DNA kits is the sensitivity of your genetic information and how you can protect this data. While genetic information can be used for good—to advance scientific understanding and potentially develop new treatments—it needs to be used fairly, and with your full understanding and consent.
If you’re thinking of purchasing a home DNA testing kit, make sure it’s from a reputable company, and be sure to look at their privacy or data protection policy. Understand who owns your data and check if the company is clear about what they will (or won’t) do with it. What happens to your DNA sample after you receive the results? Perhaps it will be destroyed. If not, why has it not been destroyed, and are you happy with how it will be stored and used in future?
Nobody wants their private information being held in companies for unknown purposes, so find out what exactly your DNA testing company entails, and how they will deal with the data you supply them. This isn’t the time to be skipping over the small print!
It’s an exciting time for home genetic testing and, with the correct support, it has the potential to present great opportunities to both patients and the healthcare industry.
Doctors are always asking patients about their family history, knowing that this information will help manage their health concerns. Genetic testing can be seen as an enhancement on conventional history taking; a way of being more pinpointed about risk. It will be possible to move from a position where someone may possibly have inherited a risk factor, to one where we have a clear indication on whether they have, or have not. This information can help direct both investigations for conditions but also encourage healthy lifestyle changes for the individual.
As we become more fluent in interpreting genetic information, our predictions should become more accurate. The information doctors give to patients can also be more personal and specific.
Although the uncertainties around this growing market should rightly be challenged and explored, it’s important to keep this concept in mind. Clinicians are comfortable investigating family history to determine risk and inform clinical decisions; patients often don’t hesitate to offer this information up.
So, if home genetic testing can be done safely, securely, and with enough consideration, and our understanding of risk and how we interpret this continues to grow, what’s not to like?