The Ethics of Direct-to-Consumer Genetic Testing

Ethical concerns and problems

One of the most obvious problems, according to experts in genetics, is the packaging together of tests for seemingly trivial traits, such as whether you possess genetic variations for curly hair or male-pattern baldness, along with potentially life-changing tests for predicting your risk for serious, life-threatening illnesses such as Alzheimer's disease. What are they marketing, and what do they actually offer? If a company says this is for fun, and it has no meaning, that's fine. But often companies say it's for fun and it's how they get around regulations, when they are offering testing that may affect or is perceived as affecting clinical outcome.

Another ethical concern is that some risk predictions offered by direct-to-consumer genetics firms are associated with conditions for which consumers might not be able to take any action. This raises the question of whether taking some tests “can cause more harm than good”. Historically, a good although unique case in point is the psychological effect on patients who sought genetic tests for Huntington's disease. When testing was first offered, there was a reasonably high suicide rate after testing, partly because the disease has psychiatric symptoms. The testing seemed to precipitate suicide in individuals upon learning they had this disease that they could do nothing about. The suicides were associated with genetic testing for the incurable and untreatable disease led to requirements that anyone seeking testing for Huntington's must first receive a psychiatric assessment.

Beyond the question of appropriate counseling, there’s also concern about surreptitious testing. The report noted that company websites require clear consent from customers before they submit a DNA sample. However, representatives from two companies reveal that a person can secretly send in a fiancée's DNA to surprise them with the results. While some direct-to-consumer testing companies request a particular specimen type and amount—such as a vial of saliva or a cheek swab—that may preclude surreptitious sample collection, other companies are willing and able to analyze DNA left on discarded items such as chewing gum, used Q-tips, cigarette butts, or strands of hair.

Regardless of public or private testing, laws in the United States have not yet determined a standard for the home DNA testing industry.

Previous cases of data breaches

  • 23andMe confirms hackers stole ancestry data on 6.9 million users, December 4, 2023 (link)
  • Ambry Genetics Settles Class Action Lawsuit Over 2020 Data Breach for $12.3M, September 13, 2022 (link)
  • DNA testing center admits to breach affecting SSNs, banking info of more than 2 million people, November 30, 2021 (link)