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The double strandard: At-home genetic testing kits should have stricter ethical guidelines

The double strandard: At-home genetic testing kits should have stricter ethical guidelines

The idea that a single saliva sample can reveal ancestral information, health risks and even personality traits sounds convenient and appealing. Popular companies like 23andMe and AncestryDNA have made their mark on genetic testing for millions of people, and mentions of their name bring about interesting conversations about a person’s identity. Widespread direct-to-consumer genetic testing presents several ethical, scientific and social concerns. When thought about thoroughly, the benefits these companies provide are not worth the consequences.

 

At-home genetic tests are often marketed as precise and reliable tools that the average person can use to collect a vast amount of information. It is tempting to discover information that could change the way you think about your identity, and companies like 23andMe provide that information without much hassle. Most ancestry tests rely on comparing the collected sample to databases used as references that contain genetic information from various groups of people. However, many of these databases are incomplete and biased towards people of European descent. These databases are not standard and vary from company to company which can create inconsistency. This can be misleading, and people who are from underrepresented populations can receive information that is vague or even contradictory. The results become less credible, and their value in defining identity is diminished.

 

These limitations can be found among at-home medical genetic testing as well. More simplified tests only analyze a small fraction of the larger genome, focusing on single nucleotide polymorphisms that are associated with certain diseases. These pieces of genetic code do provide information on certain risk factors, but they cannot account for environmental interactions with genes that affect health outcomes. Somebody may test positive for an allele that is associated with developing Alzheimer’s and panic, only to never develop the disease. Conducting a full clinical evaluation for serious health conditions like Alzheimer’s with a professional specifically trained to advise and assess each person’s risk factors is far more comprehensive and reassuring. At-home tests can introduce unnecessary panic that can be avoided.

 

Even if the results of these at-home tests are accurate, it can be challenging to leave them to consumers to interpret. The average person may not have the knowledge or skill to identify penetrance and probability of developing a disease. Some people may misunderstand a test result that indicates they have a certain gene and take it as a definitive diagnosis, which only doctors can do. On the other end of the spectrum, a result that implies a “low-risk” for a disease may impart a false sense of security so that people stop seeking standardized health care. Studies have shown that direct-to-consumer genetic testing can lead to heightened mental distress, and discovery of highly personal information can sometimes strain familial relationships as well. Getting this sensitive information about familial relationships and loved ones without proper counseling can induce emotional disturbance that is hard to address on your own.

 

The most threatening aspect of at-home genetic testing kits is data privacy. Genetic data is the most personal and sensitive form of data a person can have and these tests allow people to submit their DNA to large companies that reserve the right to use it for research, marketing and partnership purposes. People may forget that they consent to this when they sign the lengthy agreement forms, and using someone’s genetic information without explicit consent each time raises ethical concerns. An example can be seen in the case where it was used to identify the “Golden State Killer” which was done for social good. Even though this was beneficial, it causes apprehension because it leads to the possibility of identifying related individuals based on people who did share their DNA with certain databases.

 

The promise of these tests is alluring and offers a quick and easy solution to questions people may have about their identity and health status. Genetic testing is a powerful and useful tool when it is used properly and privately. Unregulated commercialization of the process allows for feelings of panic, worry and confusion that can be avoided. Our DNA is the key to who we are as humans. It deserves to be protected, respected and held to a high standard of interpretation which is often not provided by at-home testing kits.