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DNA Testing: Are the privacy concerns worth the risk?

By Edita Cosovic


Have you ever wondered about your genetic makeup? From your ethnicity to a future health condition, AncestryDNA, 23andme, and other similar companies are able to tell you this using a simple saliva sample. They are able to extract DNA and examine it at hundreds of thousands of locations with over 99% accuracy, answering all the questions you may have about yourself. All of this may seem enticing, but you may want to reconsider your decision for one main reason: privacy.


First, what is done with your DNA after being tested? As depicted on their website, your DNA will be stored and archived in a facility that is monitored. However, what isn’t mentioned is that any of their partners also have access to this DNA, and what the partners do with this information cannot be controlled. This means that if you decide to send a DNA sample, it can end up in anyone’s hands - with companies that are only trying to make money. If the wrong person has access to information on your health, it could potentially cause problems with your employment or health insurance if it is used in the wrong way.


How exactly? Well, if insurance providers can look through your genetic profile, they could reject your application to cover you if you have any long-term health problems and there aren’t really any laws stopping them from doing so. Security breaches could also result in the wrong people getting a hold of your genetic information, possibly even tying you to a crime scene you were never at. Imagine being framed for murder or losing access to your child’s health insurance all because your DNA sample was left compromised by companies that only care about your money?


This poses another question: should these major companies be able to profit off your DNA? DNA is something unique to you, tying back to you and your ancestors. As something you are born with, people claim this information should not cost you anything at all. With companies only doing things with the intent of making a profit, it brings into question what they are willing to do with your information. Along with hackers and partners, law enforcement has also requested access to the DNA samples from companies like AncestryDNA and 23andme. If this were to become the new normal, even those who do not submit a DNA sample can be at risk.


How does that make sense? Well, if any of your relatives participated, information about you can also be discovered. On its website, 23andme may need to comply with investigations and provide information to law enforcement which was used to identify a killer through his family members DNA samples. For some, this is good news, but it brings up concerns about whether or not people should be notified that their relatives' DNA is shared, which could reveal information about them as well.


Although information about your privacy can be read on privacy policies, they are often left very vague in order to confuse consumers who are interested in their origin story or concerned about their health. They can even choose to alter these at any time, making it very hard to trust companies. If they decide to change their policies, they can do so as long as you consent, but how many people truly read through long and confusing policy information? Plus, they would already have your DNA sample, so how much can you really do at that point?


In one case, a woman named Lori Collett sued Ancestry Corporate, claiming their policies were misleading and that she did not know what was actually happening with her DNA. Donor DNA was being used in research studies, and since it was in the fine-print in misleading terms, Lori (as well as tons of other AncestryDNA users) did not know the true story of what their DNA was being used for. This can lead to even further problems down the road because of something called de-anonymization. This is a strategy where their anonymous DNA data could be cross-referenced with physical features associated with it to identify who the donor is.


In the end, the choice is yours. These companies are able to provide you with so much information about you and your family in just a few weeks, some of which can be very helpful and life-changing. You could even potentially find a sibling you never had if they also participated, possibly even reuniting families. These companies also do try to maintain their trust with consumers so they can stay in business, but as even they have said, there are some things that are out of their control like hackers or if a person tries to track down their donor. If you think the benefits outweigh the privacy concerns, good luck on your DNA testing journey!


References:

https://www.usatoday.com/story/tech/2019/07/04/is-23-andme-ancestry-dna-testing-worth-it/1561984001/


https://www.npr.org/sections/health-shots/2018/08/07/636026264/genetic-tests-can-hurt-your-chances-of-getting-some-types-of-insurance#:~:text=Genetic%20Tests%20Can%20Hurt%20Your%20Chances%20Of%20Getting%20Some%20Types%20Of%20Insurance&text=RF%2FGetty%20Images-,The%20results%20of%20genetic%20testing%20%E2%80%94%20whether%20done%20for%20health%20reasons,long%2Dterm%2Dcare%20policy.


https://www.cnbc.com/2018/06/16/5-biggest-risks-of-sharing-dna-with-consumer-genetic-testing-companies.html


https://www.hplusjournal.com/home/the-privacy-concerns-of-genetic-testing

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