Ancestry DNA testing kit: should I take it?

The DNA analysis technology has been around for a while. Today, scientists not only make use of the growing understanding of our genetic code for disease diagnosis and prognosis, and now also for partner-matching and ancestry information services. Companies like AncestryDNA®, 23andme®, MyHeritage DNA®, LivingDNA® and many others, provide ancestral DNA test services. But how did DNA-testing services become such a hit?  A major contribution to the development of this market comes from new sequencing technologies with faster processing times and lower costs (NIH, 2021). Through semi-automated high-throughput processes, (23andMe, 2022) companies are able to process thousands of samples a day. They have also learned how to provide DNA information in a user-friendly format, making it highly appealing for everybody to get their DNA analysed (Fig.1).

As the popularity of these tests increases, more and more people start raising concerns about data protection and the accuracy of the results. But who might be more interested in our DNA data than ourselves? In addition, what kind of information can we get out of our DNA sequencing? Let’s try to answer these questions and more!

What is a DNA test kit and how does it work?

Depending on the company, you might have to provide a saliva sample or a cheek swab, which you then mail to the lab in a prepaid package. From this sample, they will extract the DNA that will be used for sequencing. The results of your DNA’s sequencing will be compared to the data available in their databases.

What information can you get out of a DNA test?

Different companies, different product packages. For instance, 23andMe offers reports on ancestry, traits, health predisposition, carrier status, wellness and pharmacogenetics (23andme, 2022). Let's look into a few examples.

Ancestry: This report determines which proportion of your DNA come from which genetic population by comparing them to the company's database. Companies generate a reference panel of sequences from thousands of people, whose families have lived in a geographical area for generations. Within those geographical populations, scientists look for genetic trends, such as the presence or absence of different sequences within the DNA. Your ethnicity estimate is created by comparing your DNA to these reference panels.

Traits: Your DNA sequence results can be analysed in different ways to also detect traits such as eye and hair colour, skin pigmentation and cilantro aversion (Healthline, 2022). With this information, you can also check how common a trait is within people sharing your geographical ancestry. These attributes come from your paternal and maternal DNA and may be passed down to your future family.

Carrier status: This is probably one of the most controversial reports available. The carrier status informs you about the possibility of suffering from certain diseases. This by far does not mean that you will suffer from it and raises the question of how beneficial this information is. In exceptional cases, preventive medical procedures can be performed to completely prevent a person from developing a certain disease. However, most of the time, the person is left with the knowledge of possibly developing certain pathologies in the future, which could cause mental stress. This has opened controversial discussions about the carrier status data. On the other hand, despite not having the condition, carriers can pass the genetic predisposition to their children, which might be important regarding diseases such as cystic fibrosis when planning a family.

What about the data protection of a DNA-test?

During the laboratory processing, no one has access to your identity: the entire process is tracked via the code on your sample tube, which each person activates in their private account. The DNA results are stored in a database that is restricted for internal access. Thanks to the United States law “Genetic information nondiscrimination act (GINA)” from 2008, it is illegal for health insurance companies, group health plans and most employers to discriminate against you based on your genetic information (NIH, 2022) [Note of the editor: the servers hosting the databases with the collected genetic information are usually located in the US and therefore do not follow EU data protection regulations]. Most importantly, you can delete your DNA results from your account anytime you like. As long as the laws don’t change and companies comply with those laws, your DNA data would seem to be protected. There is however still the issue of law enforcement agencies requesting access to the databases of commercial DNA sequencing companies. An example worth noting is the one of the arrest of the Golden State Killer: the FBI fumbled for clues in the dark for decades, until one day they linked the DNA found on the crime scene to a family tree available from a company offering ancestry DNA services. From there, they narrowed down their search until they found the culprit. In this case, it wasn’t even the killer himself, who had taken the test, but a distant relative. This raises a broader issue in terms of data protection, as depositing our DNA data in companies’ databases can undermine the privacy of our family members.

AncestryDNA states that the user always maintains the ownership of the DNA and DNA data. They also confirm that “Ancestry does not sell your Personal Information”. You can find detailed information on the Data Privacy for AncestryDNA here (AncestryDNA, 2022) and for 23andMe here (23andMe, 2022).

Overall, commercial DNA sequencing tests appear to be an attractive source of information to satisfy the curiosity of many regarding their origins, although not everyone might feel reassured about their privacy. We have taken ancestral DNA tests from two different companies and want to share our experiences with you.

Karla (from Mexico): My experience with AncestryDNA

I used the services from AncestryDNA to get some information about my ancestry. Before deciding on a company, I compared prices, delivery time, how many markers they were able to identify within their privately owned libraries and extra information they would provide. In the end,I bought the kit from AncestryDNA in 2021 (price: 99 USD). With the kit, you receive a plastic tube to collect your saliva, which you will send back to the company. The shipping costs were covered by the initial price that I paid.

Beforehand, I had read up on the terms of data sharing. AncestryDNA states that they do not share or sell your data with third parties, but they include the option of sharing your data for “research purposes”. An important fact to know is that while you need to provide an address to receive the kit, you do not need to provide a real name: you can always use an alias. The most important thing is to activate the code of your DNA-sample tube when you ship the sample back to the company, so that your sample and results are only linked to that code through the whole process. In general, I am very satisfied with the service. The two top ethnic results I got were as I expected from the regions of my known ancestors and every time they update their genomic-database, my results also change, giving me more detailed information.

Dalmira (from Kazakhstan): My experience with MyHeritage

Before choosing, I compared the prices between packages and companies. They looked very similar and I chose the “Basic” package for ancestry service from MyHeritage. When I ordered the kit in 2018, it cost 87 euros. Today, this package is much cheaper: 56€ (excl. shipping) (www.myheritage.com/dna). The information included on the website, the privacy policy as well as their terms and regulations looked reliable and trustworthy. They state that the customer can delete their data at any time, and they explain which data is necessary to be collected for the service and registration procedures (e.g. name, address, payment details, etc.). However, for precaution I decided not to get an extra report on my health preconditions. (www.myheritage.com/privacy-policy) During the order, I wasn’t asked whether I wanted to keep my data or delete them immediately.

The kit arrived quickly. It contained the instructions, the activation card, two vials, two cheek swabs, a plastic bag and a return envelope. First, I had to activate the card on the website. Then, I made a few scrapes from my cheek with a swab and placed the swab-end into one of the vials. I sent my samples by post and received the result via email after 4 weeks, as was mentioned on the website. To be honest, I was not impressed by the results, as they were pretty much what I expected. They have 5000 participants in total for this project and they could state 42 populations by geographical origin. It is a good outcome, but nevertheless, my heritage information didn’t look as accurate as I had expected. Although the highest ethnicity estimate stated that I have Mongolian heritage, a small percentage also identified me as Caucasian. I believe the results might be improved with the enriched database over a longer period of time.

Written by Dalmira Merzhakupova & Karla Juárez Núñez; Edited by Chiara Galante & Debbie Shi. Featured Image: NGC/Design.

Resources:

NIH. National Human Genome Research Institute. (2021, November 1). The cost of sequencing a human genome. February 2022. Retrieved from this link.

23andMe. Customer care. February 2022. Retrieved from this link.

23andMe. Product overview. February 2022. Retrieved from this link.

Healthline. February 2022. Retrieved from this link.

AncestryDNA: Privacy for ancestry DNA testing. February 2022. Retrieved from this link.

NIH. National Human Genome Research Institute. The Genetic Information Nondiscrimination Act (GINA). February 2022. Retrieved from this link.

23andMe. Privacy and Data Protection. February 2022. Retrieved from this link.