Ethics and 23AndMe

The direct to consumer genetic testing has proven to be a gold mine for enterprises. Many genetic tests are aimed at consumers to take control of their health, investigate the risk of diseases, and learn about their ancestry (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10317585/). This article also addresses a concern I never thought about--the test's impact on stereotypes, both from the public and preexisting ones. 

The article indicates the test's lack specificity and can result in a great number of false positives because of the single nucleotide polymorphism its made to compare to. SNPs can have polymorphisms that are related to disease, but when comparing a rare sample to genome-wide association studies, there is a significant increase in false positives. These false positives then increase the risk of patients having unnecessary testing and procedures done. 23AndMe only identifies the breast cancer gene that is only common to Ashkenazi Jews, and not the general population. If the consumer wants to know about their chances of inheriting breast cancer, and they are not Askenazi, then they can get a false sense of hope. Can you imagine having a family history of breast cancer, then taking this test and getting a result back indicating you do not have the BRCA mutation only to develop breast cancer a few years later? In my opinion, if you are going to 'indicate diseases' based on genomics use a biomarker found in more than one population...? There is also a lack of genomic sequences from specific ethnic groups, and there a lack of genetic research in those populations.

The article also indicates that these results are emailed to users. These users may not be expecting to get results stating they are doomed--and will have to face it on their own. Results can be very misleading without medical advice and proper support. I think the company should include resources for further interpretation or access to a medical professional if users purchase their tests.

DATA PRIVACY--the big elephant in the room. Consumers have the right to refuse their data for research purposes, although many consent to its use. Data protection and privacy is hard to find on their websites as is. What happens to the data if the company closes for good? Who knows. And what about the hack that occurred last July? The hackers were able to access genetic information, consumer's personal data, health information, and other personally identifiable information. This raises concerns of potential discrimination and stigmatization on their genetic information (https://businessreview.studentorg.berkeley.edu/genetic-data-in-jeopardy-unraveling-the-details-of-the-aftermath-of-23andme-hack/). THE BREACHED DATA TARGETED Ashkenzai Jews and Chinese ancestry, that was then SOLD on the BLACK MARKET. With that said, who owns the genetic data collected, the individual or the company that tested it? This raises concerns about ownership rights and guidelines for data handling, storage, and sharing of genetic information. 23AndMe and Ancestry both have stated 3rd party involvement, and therefore the sharing of genetic information to those parties. Thus, they are not 'responsible' for their security protocols of those partners (https://ethicsunwrapped.utexas.edu/case-study/ethical-use-of-home-dna-testing).