GEDMatch, the DNA database which made news recently for its instrumental role in solving cold criminal cases in the US, has blocked law enforcement from accessing information about the millions of people on its system.

GEDMatch lets customers trace their relatives by uploading DNA results from services such as 23andMe. In 2018 the database was vital in helping law enforcement officials catch a serial killer decades after his murders, through access to its consumer DNA database. Around 50 other cases have been solved using the system.

In a sudden reversal of its policy, however, the company has now changed its terms and conditions to opt its users out of police searches, requiring them to assent before their information can be used.

While the change has been hailed as a victory for rights activists everywhere, the blow to law enforcement officials – and indeed, families of victims of violent crime – cannot be denied. Interestingly, the public reaction to the news was divided, with a large number of individuals coming out to urge others to opt-in to the new system, which will only allow for investigation of rape and murder.

In fact, it seems many of those uploading their information to the database did so precisely because of the ability to help law enforcement. The message stemming from this incident is clear: while the landscape of health information has changed forever, with a much greater emphasis on data privacy and security than ever before, transparency and effectiveness of data usage is even more important.

Data holders should be aware that while the fight to gather and store data will remain, letting people understand clearly and completely what their data will be used for, and showing them that it is being stored or used for the right reasons, will go a long way to help change minds and create a trust that is sorely lacking across the breadth of the life science industries.