Privately held companies Ancestry and 23andMe hold some of the world’s largest collections of human DNA. These companies were able to build such large databases in a short time because millions of people bought their DNA kits in order to find out about their ancestors, potential health issues or other personal traits that can be found in someone’s DNA. However, by now the initial hype surrounding their services has faded and sales have stagnated, forcing 23andMe to lay off 100 people.
What does this mean?
In part, the decline of these companies may be related to growing privacy concerns among the general public. More likely, their problems also arise from the fact that they have little to sell beyond a single test and, as it stands, they have no recurring revenue from their early adopters. In response, these companies are looking to develop new tests for their existing customer base. These tests could cover other diseases and may even include traits of our personality. The CEO of 23andME, for example, says she’s determined to make inexpensive genetic information available without medical professions getting in the way. At the same, these companies try to connect with pharmaceutical companies and academic research groups so that they can create precision medicine together. So, in order to stay profitable, these companies expand their activities and collaborations with third parties.
The privacy matters that come with surrendering one’s DNA to a private business are still underexposed considering the depth of the (potential) information and the scale of the databases that are built by these companies. Although, for example, 23andMe promises to safeguard this private information, there are already a few examples in which a large DNA collection of a privately held company was used for purposes that its consumers didn’t anticipate. In the case of the golden state killer, for example, the FBI gained access to the database of GEDmatch that could find the suspect even though he never participated in a GEDmatch test (some relatives did). When these companies are in need of new business, their data-filled treasure chests will be extremely valuable for, amongst others, health insurers, the pharmaceutical industry and governments. We can easily imagine how this could result in a slippery slope as privacy concerns are challenged by potential society and commercial gains.