Direct-to-Consumer: Is Genetic Testing Always Helpful?

Have you ever wondered if you’re related to a famous historical figure? Or even why you get flushed cheeks when you drink alcohol, but your best mate doesn’t? With the help of direct-to-consumer genetics, otherwise known as at-home genetic testing, it is now possible to try to answer these questions, and more.

Genetic testing looks for changes in your genes, which may be linked to certain trait characteristics or diseases. Ordinarily, genetic testing is only carried out by healthcare professionals, who determine the appropriate test to carry out, collect your DNA, then analyse and interpret results before sharing and explaining the results to the patient. However, advancements in genome sequencing have lowered the cost of genetic testing, and now it is possible for companies to offer private genetic testing, without the input of healthcare professionals. Customers order their tests online and carry out the testing themselves, normally by swabbing the inside of their mouth or spitting into a test tube, then send it back to the company who will analyse the DNA and comprise an information sheet of traits that the DNA has revealed.

Direct-to-consumer companies offer several types of DNA services. They can look at your ancestry, which uses your genetics to tell you where your ancestors come from, and even map their movement across the globe, over generations. They can look at trait expression, which uses your DNA to tell you whether you hold the variation in genes which, for example, makes your hair more likely to lighten in the sun, or whether you’re more likely to prefer sweet rather than salty foods. These fun, yet maybe more trivial revelations are what has made direct-to-consumer genetics so popular, as they provide accessibility to a unique service, which aren’t offered by healthcare professionals.

However, some direct-to-consumer genetics companies also offer a service which can tell you whether you carry genes which could increase your risk of developing diseases. This area of direct-to-consumer genetics is often condemned by healthcare professionals. Although everyone has the right to find out their genetic information and whether they have an increased risk of developing diseases, the direct-to-consumer companies don’t necessarily advertise the consequences to mental health and well-being that can come from finding out this information without the proper support.

This is why health professionals are so cautious when carrying out genetic testing and take steps to provide proper genetic counselling services when diagnosing diseases; it’s just as important to help the patient understand and make appropriate decisions based on what the genetic tests tell you. Once you know something, you can’t un-know it. However, the direct-to-consumer genetics companies don’t always provide proper counselling; this could lead to customers having to deal with the mental turmoil of finding out they carry a particular gene which increases risk of developing a disease, but also leaves them to make potentially life-changing decisions, with relatively little information.

Furthermore, these companies also offer risk analysis on likelihood of developing diseases which currently have no cure, such as Alzheimer’s or Huntington’s disease. Ordinarily in the healthcare system patients are not offered genetic testing for these types of diseases. This is because of the evidence of severe mental health issues arising from finding out you could develop an incurable disease. Historically, when genetic testing was offered for Huntington’s disease, the diagnosis led to an increased rate in suicides. This is partly due to the psychiatric symptoms associated with the disease, which was triggered by knowing the results of the genetic testing. In a healthcare setting nowadays, it is a requirement for someone to go through psychiatric testing before they are tested for Huntington’s disease. This obviously is less likely to happen with direct-to-consumer genetic testing, and therefore, the level of ‘duty of care’ around the mental health impact of finding out this information, along with the level of appropriate counselling provided by the direct-to-consumer genetics companies is considered a huge flaw on their part and continues to invite considerable debate about the ethics of direct-to-consumer genetics.

On top of the impact to the individual, the wider implications of gene testing can be just as traumatic. The results from your test could also impact your extended family and children. With many genetic diseases, there is a chance that it can be passed on; therefore, if you find out you have a gene which increases your risk of developing a disease, chances are that a member of your family also has this gene. Again, here, you are left to go through the likely difficult experience of explaining the results to your family, and what that means for them. Ordinarily, in the healthcare system, genetic counsellors would support and guide you through this process, or even take on some of the conversations themselves, which is something not offered by direct-to-consumer genetics companies. In short, sometimes knowing you’re at an increased risk of developing a disease, without the proper counselling and knowledge, can do much more harm than good.

This is just a snapshot of this topic, and there are so many more elements to consider. Are all the companies meeting rigorous quality control standards to ensure validity? Will the test results have an impact on your ability to claim health and life insurance? Do customers consult a doctor after they’ve received their results and then go through the process again? Conversely, will customers delay visiting a doctor, even if they are showing symptoms of a disease, because a genetic test told them they’re not at risk?

I am conscious of not making this post an ‘and another thing….and another thing….’ piece of writing.  I think this topic is incredibly important, and more transparency from these companies about the impact genetic risk analysis can have on mental health, especially without appropriate counselling, needs to be provided. I feel with the risk profiling element, direct-to-consumer companies are capitalising on fear of illness to make a quick buck.  I know some people believe that they would rather know, than not know, and it is completely within their rights to make this decision. However, the thing about free choice, is that it can only happen when all the information is available, meaning these companies need to clearly provide information on the possible negative impact the results and the subsequent knowledge can have, not only on yourself, but also your family.

Overall, the more benign elements of genetic testing can be interesting and fun, like finding out the migration patterns of your ancestors. However, if someone is considering taking a genetic test to see whether they have an increased risk of developing a disease, the impact on your mental health must be considered. In my opinion it’s best to speak to a healthcare professional before buying one of these tests, as they can provide you with a more holistic understanding of what the results might mean, and whether it really is the best decision for you at this point in time.

References

https://medlineplus.gov/genetics/understanding/dtcgenetictesting/directtoconsumer/

https://pubmed.ncbi.nlm.nih.gov/29754566/

https://www.the-scientist.com/news-opinion/opinion--consumer-dna-testing-is-cross. ing-into-unethical-territories-64650

https://medlineplus.gov/genetics/understanding/dtcgenetictesting/dtcrisksbenefits/

https://geneticalliance.org.uk/information/service-and-testing/direct-to-consumer-genetic-testing/

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2810%2961939-3/fulltext

 

Disclaimer

The information in this blog is for information and entertainment purposes only. I am not a medical professional, so I have never and will never give medical advice in this blog. You should always speak to a healthcare professional about your unique health needs. My opinions are entirely my own and do not reflect the organisations or people I work for. I only discuss published literature in this blog which are referenced with links.

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