Data in the wrong hands

Increasing numbers of people around the world are uploading their DNA data to public ancestry websites. But as DNA testing continues to grow in popularity, a key concern is often ignored: privacy.

In the USA, testing companies have acknowledged that DNA data are sometimes shared with, or sold to, third parties for use in research. Last year, 23andMe announced a partnership with GlaxoSmithKline through which the pharmaceutical company will use home DNA results from 23andMe’s 5 million customers for new drug research. In addition, 23andMe has sold access to its database to at least 13 outside pharmaceutical firms. One buyer, Genentech, paid $10 million for the genetic profiles of people suffering from Parkinson’s disease.

Peter Pitts, a former commissioner of the Food and Drug Administration (FDA), who now serves as president of the Center for Medicine in the Public Interest Forensic Genetics Policy Initiative, is calling for the implications of data privacy and DNA testing to be scrutinised.

“The industry’s rapid growth rests on a dangerous delusion that genetic data is kept private”, Pitts wrote in Forbes last year. “Most people assume this sensitive information simply sits in a secure database, protected from hacks and misuse. Far from it. Genetic-testing companies cannot guarantee privacy. And many are actively selling user data to outside parties.”

Privacy and DNA testing

The popularity of these ancestry kits is understandable. For less than £100, customers can discover their heritage and potentially uncover risky genetic mutations. The problem is that these DNA results are increasingly being used for applications that the customer is unaware of.

According to researchers from Columbia University, it will only take about 2% of adults to have their DNA profiled in a database before it becomes theoretically possible to trace any person’s distant relatives from a sample of unknown DNA – and therefore, to uncover their identity.

“Once we reach 2%, nearly everyone will have a third cousin match, and a substantial amount will have a second cousin match”, said computer scientist Yaniv Erlich. “My prediction is that for people of European descent, we’ll reach that threshold within 2 or 3 years.”

Such statistics are forcing us all to rethink the meaning of privacy in the DNA age.

“People don’t think about the security of their DNA as they don’t realise its value. You can change your Social Security number or your computer password, but you can’t change your DNA. I’m not saying DNA testing doesn’t have value, but people don’t understand the privacy and security implications”, warned Pitts.

“In the 21st century, we must learn to value our personal genetic code”, he said.

AlphaBiolabs wants to reassure its customers that its testing is 100% confidential. We will not disclose results or personal information to third parties and we password protect all data. In addition, we will only discuss any details of the testing with those who are entitled to know (on receipt of correct passwords or answers to unique security questions). You can read more about how confidential our service is in Privacy and DNA testing. If you have any queries or require further information, please call AlphaBiolabs on 0333 600 1300 or email info@alphabiolabs.com