I have seen countless commercials for DNA testing services like 23andMe and Genos, but I have never seriously considered taking one of these tests, how a DNA test works, or what I could learn from the results. From a saliva sample, these companies extract DNA and process the information on a genotyping chip (23andMe, n.d.). The lab compares the genome from the sample to their genetic database using algorithms that look for variants in the sequences (23andMe, n.d.). More specifically, they are detecting single nucleotide polymorphisms (SNP’s) within the sample (Rajewski, 2018). Different frequencies of SNP’s occur in different geographical regions of the world, and these characteristic differences contribute to the ancestral results of the DNA test (Rajewski, 2018). In addition to ancestry reports, DNA tests can provide information such as traits, health predispositions, wellness reports, and carrier status reports (23andMe, n.d.). However, the type of results from a DNA test vary between companies and even within a company based on which services are chosen.
With any DNA test, there is a question about the accuracy of the results. People have actually received DNA testing from multiple companies and received different results from each company. One of the major reasons for the differences in results is each company has their own private genetic database that they use to analyze a sample (Rajewski, 2018). Companies also only analyze a select number of the millions of SNP’s in the human genome, meaning many variants that contribute to ancestral lineage aren’t considered in the results (Rajewski, 2018). In terms of the accuracy of the health and wellness results of a DNA test, 23andMe states that the results of their tests are “not intended to diagnose any disease,” and their Type 2 Diabetes health predisposition report has not been approved by the FDA (23and Me, n.d.).
Another criticism of DNA testing companies is the concern for privacy. While these companies do separate your personal information, such as your name and address, from your genetic information, 23and Me does “use and share aggregate information with third parties” (23andMe, n.d.). This means that your personal information is stripped from your genetic information and aggregated with other’s information (23andMe, n.d.). The companies that buy this information are normally pharmaceutical companies that want to use the information for drug development (Rajewski, 2018). There is also the possibility that although your information is sold anonymously, it is still possible that the identity of the sample can be determined based through other databases (Rajewski, 2018). Finally, when companies update their privacy policies, they are not required to inform previous customers of this change, meaning it is solely the individual’s responsibility to ensure a company’s privacy policies haven’t changed since they received the DNA test (Rajewski, 2018).
Based on the accuracy and privacy information alone, I don’t think I will be purchasing a DNA testing service. There is also the possibility that information I learned from the tests could have a negative impact on my life. For example, if I learned that I had a genetic mutation that resulted in a premature death, I wouldn’t want to live the rest of my life in fear because of it. In terms of the privacy aspect of DNA tests, even though the companies claim they only share anonymous genetic information, they cannot 100% guarantee anyone’s privacy, which is extremely concerning to me. While the companies can use the valuable data collected for important medical research, they shouldn’t share any type of information, aggregated or not, without each individual’s explicit consent. As far as insurance companies are concerned, I think it would be unfair to raise or lower’s someone’s insurance prices based on their genetic sequences, which may or may not be accurate. Overall, I think these ethical issues of DNA testing have become more prevalent in recent years due to the rising popularity of DNA testing companies. These issues definitely represent a “grey area” in medicine, and I don’t think there is one right answer. While choosing to take a DNA test is a very personal decision, I think that before purchasing a sample kit, an individual should always weigh the risks and benefits of their decision.
References:
How It Works. (n.d.) 23andMe. https://www.23andme.com/howitworks/
Rajewski, G. (2018, January 26). Pulling Back the Curtain on DNA Ancestry Tests. Tufts Now. https://now.tufts.edu/articles/pulling-back-curtain-dna-ancestry-tests