From the Lab to the Living Room: The Ethics of At-Home DNA Testing

Genetic testing. It sounds like something that can only be done in a fancy laboratory with microscopes and researchers in white coats. But it’s also something millions of people have done from the comfort of their living rooms.

If you’ve ever used an Ancestry or 23andMe kit, you’ve already participated in a form of genetic testing. These sample kits can reveal ancestry, personality traits, or even hints about deeper health risks. As science and technology progress, genetic testing is becoming a much more prevalent and powerful tool in medicine. With genetic testing, doctors can better predict the diseases a patient may develop and start preventative care and monitoring early. With knowledge of these results, patients can take control of their own health and know which symptoms they should look out for. Diseases that were once fatal can now be caught early enough to save lives. With outcomes like these, it’s hard to imagine any downsides to genetic testing… but what happens when we begin to know “too much” about our own biology? 

Size of the global direct to consumer genetic testing market (in millions of dollars)

A 2020 review by J. Scott Roberts and his colleagues at the University of Michigan describes this tension. The researchers highlight how advancements in genomic science have made it possible to test for dozens of conditions, but they also warn that this brings about ethical and communication challenges. One example is in the case of Huntington’s disease, a condition caused by a single gene mutation. In Huntington’s disease, the nerve cells in the brain slowly decay over time, causing difficulties with movement, difficulty with memory and decision making, difficulty speaking or swallowing, and mood changes such as depression, anxiety, or personality changes. Unfortunately, there is currently no cure for Huntington’s disease and it is ultimately fatal, with a life expectancy of only 15-20 years after the onset of symptoms. When testing for this single gene mutation, a positive result means that symptoms will appear eventually. For patients and families, this can be difficult to process and hospitals have strict protocols requiring multiple counseling sessions, mental health assessments, and in-person discussions. However, with the rise of at-home test kits, not all testing follows this model. Today, consumers can learn about their genetic risks for diseases through an app or online dashboard, often without ever speaking to a genetic counselor or doctor. Although convenient, what are the psychological implications? And is it empowering or unnecessarily worrying to take your health into your own hands?

Difference between healthy brain and Huntington’s affected brain 

*Source: shuttershock (royalty free)

Studies have shown that most people who choose predictive testing experience only temporary distress, often finding meaning in planning for the future. In conditions like Huntington’s disease, genetic testing can offer answers that once took generations to find. For families who have watched relatives fall ill without knowing why, a test can replace fear with understanding. For doctors, these results open the doors to targeted monitoring, early interventions, and clinical trials that could slow or prevent disease. Still, knowing one’s genetic risks can reshape how people think about their health and their future. Many who test positive for a mutation report mixed emotions, emphasizing that how this information is communicated matters. A result given without context can be misunderstood; a statistic presented without empathy can sound much worse than it is; and without the support of specialists, next steps may seem daunting.

As genetic testing becomes more accessible, especially at-home testing, researchers are beginning to ask if this model is the right one for the future of genetic medicine. Although it provides advantages in reach and convenience, it raises questions about accuracy, interpretation, and emotional support. Without the structure of clinical counseling, is it more harm than benefit to the patient? Or does at-home testing provide an entry-point for people to join a conversation about their genetics that may not have occurred otherwise? 

As genetics moves from the lab to the living room, the conversation is no longer about what we can uncover in our genes, but how thoughtfully we can communicate and support those receiving these results. 

 

Sources:

https://www.mayoclinic.org/diseases-conditions/huntingtons-disease/symptoms-causes/syc-20356117

https://www-sciencedirect-com.ezproxy.gl.iit.edu/science/article/pii/S0969996120301467?via%3Dihub

https://www.ancestry.com/

https://www.genome.gov/Health/Genomics-and-Medicine/Polygenic-risk-scores