Genetics are the world’s newest privacy worry

Last month, US law enforcement agencies made a breakthrough in the longstanding Golden State Killer case by linking Joseph James DeAngelo Jr to the crimes using public DNA databases. While the arrest is a victory for those affected by the crimes, others see it as worrisome because it could allow certain entities to invade people’s genetic privacy.

Recent privacy breaches from Facebook has made the American public weary about how personal information is being handled, and genetics are quickly coming into the spotlight as the next big hurdle. In fact, there is no developed nation on Earth that has concrete genetic privacy laws in place, making this is a completely new topic for the entire world.

Genetics are the biological information inside every human being that determines everything about them – from their hair color to their pre-disposition for diseases. The topic of genetic privacy is also extremely invasive, so having this personal information in the hands of strangers is definitely a cause for concern to many.

Forensic medical assistant Birgit Bayer sorts test tubes filled with materials for DNA testing at the Munich institute of forensic medicine January 27, 2005. (File photo: Reuters/Michaela Rehle)

Using DNA evidence to identify and convict criminals has been common practice for law enforcement agencies over the years, however, the method used to implicate DeAngelo is relatively new. This time, investigators used a public genetic analysis website, called GEDmatch, to explore family trees and see whether any contained matches to the DNA samples collected from Golden State Killer crime scenes.

Investigators said the DNA testing tools helped them narrow down their search to only a handful of people and that – in short – DeAngelo’s arrest was based on information provided purely by his relatives.

The problem with this approach is that there are no US federal or state laws in place to stop local police from using public databases to collect such information – which is a huge oversight for privacy. Genetic privacy is a relatively new subject for lawmakers and even the nations that do have laws about genetics only prohibit discrimination from the government and businesses, but not overall use. Discrimination is outlined in the US Genetic Information Nondiscriminatory Act of 2008, Canada’s Genetic Non-Discrimination Act of 2013 and several other legislative acts from various countries.

Yet no developed nation has put forward any sort of law about protecting such in-depth information for use by law enforcement agencies. If left unprotected, the US government can probe into its citizens genetic makeups for any reason at all. If the US government has access to this information, it is also reasonable to assume that it can be misused as well.

As of right now, there is nothing stopping the US government from looking into its citizen’s genetics by using public genetic test kits like 23andMe or Ancestry.com. In fact, according to 23andMe’s transparency report, the genetic information that its users provide to the company can be subpoenaed by the government.

Furthermore, a 2013 US Supreme Court case, Association for Molecular Pathology v. Myriad Genetics Inc., found that DNA is not property – which could blur the lines of genetic privacy in the future.

Beyond government use is the fact that many of these genetic testing companies have the right to own and sell its customer’s genomes without providing any compensation. 23andMe has even said that one of its long-term goals is to sell its customer’s genetic information to medical research firms for profit, according to CNN.

Though customers are freely providing this information in order to look into their family’s lineage – they should be allowed certain inalienable rights for how their information is used, especially if it’s for profit. Moreover, when a person provides their genetic makeup to one of these companies, they are also giving away genetic information about their relatives – both living and dead.

Unfortunately, the fight for genetic privacy is just beginning and the opposition seems to be silenced as a result of the recent capture of the Golden State Killer. US law enforcement agencies are so thrilled with their recent results that police from Northern California said they would use similar techniques to track down the Zodiac Killer – another one of the US’ most notorious uncaptured serial killers.

There is some form of hope on the horizon, as the European Union will be enforcing its General Data Protection Regulation (GDPR) starting May 25. This will protect the data of European users across all global companies. Furthermore, it states that website user agreement forms must be “given, specific, informed and unambiguous” to help people understand what their rights are when they start using a platform like Facebook, Instagram, or Airbnb.

As of now, the GDPR only protects European users – but that could extend to heightened data protection for all people since privacy is becoming a major issue. With any luck, this could even cover genetic information given to these ancestry websites.

Yet the need for privacy is paramount in all forms and the world’s governments need to create privacy laws to protect this information. People should not have their rights being tossed aside for the sake of profit and they definitely shouldn’t have to worry about losing control of their genetic makeup. Certain steps need to be taken to ensure that people can maintain some level of privacy in the digital age, especially considering that genetics explain everything about everyone.