Have you ever wanted to learn more about your ancestors and where they came from? Or maybe you’ve wanted to know your risk of getting a serious disease in the future. If so, then you are probably aware that there are companies out there offering to answer these questions for you. No, they aren’t fortune tellers, they are geneticists. By giving them a sample of your DNA and paying a small fee, companies like 23andMe or Ancestry will map out your DNA, analyse your genetic information and give you the answers to these intriguing questions. However, not everyone fully understands what happens to our genetic information after we agree to have it analysed.
When you apply to have your DNA tested, you are required to read through and accept the terms and conditions set by the company…but who actually reads that stuff? Well, when it comes to analysing your genetic makeup, you might want to read the fine print. By signing these forms, you’re agreeing to give them the ability to process, analyse, distribute and communicate your genetic information with other
companies, usually pharmaceutical research companies that are looking into genetic traits and certain diseases.
This is part of the reason why this type of genetic testing is so cheap. DNA analysis is a complex process and the companies don’t make their profits from us as customers. The majority of profit comes from sharing our genetic information with these third-party companies. Usually, you can opt to not have your DNA shared with other companies, although over 80% of 23andMe customers have agreed to share their results for the purposes or research. Alternatively, you can choose to delete your personal information from the company database after receiving the results.
The companies that pay for your genetic information usually use it for research and development purposes, but as our understanding of genetics improves there are certain risks to consider when it comes to your own DNA. For example, if insurance companies could access your genetic information they could easily penalise you if you have any high-risk genetic markers. Certain businesses could potentially use the information to market specific products toward you. There is even the possibility that hackers could steal your genetic information and use it for nefarious purposes! There is no record of these events taking place yet, but there is no reason why they couldn’t happen in the (near) future.
It has been suggested that we need genetic privacy protection laws that prevent sharing and increase the security protecting this highly personal data. However, it is important to consider that increased security around such information could make it more difficult for research studies that require genetic information from a wide range of people, leading to slower progression in the medical research field. Perhaps
companies just need to be clearer about their intentions with people’s genetic information and privacy concerns should be discussed more thoroughly before customers willingly offer up their DNA?
If you choose to have your DNA tested and opt to share the results with third-party companies for the purposes of research you will discover a lot about your genetic makeup and you will be contributing to studies that will improve our understanding of genetic diseases, but you are putting your genetic information at risk of being used improperly in the future. It is entirely possible that your DNA would be kept secure and only used for important scientific purposes, but DNA is highly specific and personal information that could be abused by businesses in the future for the purposes of making money, so it is important to consider what you are giving away when you spit into a cup.
