January 17, 2013
Your Genome May Not Be Private
My take on privacy, especially on the Internet is that if we and/or the law can’t safeguard our privacy, we should at least know what we are giving up when we give out even innocuous information about ourselves. It’s a complicated process to keep track of it all, of course, as more and more of our characteristics are collated in databases. It was with great interest that I came across this article in Wired, Scientists Discover How to Identify People From ‘Anonymous’ Genomes. Apparently, with nothing more than the analysis of a DNA sample and a little genealogical sleuthing, it is possible to link that sample with an individual with a 12% success rate for Caucasian males. Here’s an example from the article:
Erlich and his team started with the observation that Y-chromosomes and surnames tend to go together. That’s because sons always inherit their father’s Y-chromosome and typically inherit his surname. Certain genetic stutters on the Y-chromosome, in which the letters of the genetic code repeat over and over, vary widely in the general population but tend to be shared by closely related men.
In a few highly publicized cases, people have exploited this to find their sperm donor father. In 2005, for example, a 15-year old boy reportedly found his biological father after having his own Y-chromosome tested and combing a commercial genealogy website for close matches. These matches pointed to a potential surname, which the boy combined with other clues — including the sperm donor’s birth place and date — to track him down.
The current research relies on matching the individual genomes with other publicly known information. It wasn’t too long ago that researchers were able to de-anonymize aggregated search queries. One example of how that works is here. I can imagine how marketers and health care providers may be interested in this. An email or a display ad might say something like “Get your doctor to proscribe Crestor. You’re genetically disposed to high cholesterol.” Here’s another quote from the article:
This is just the beginning. Just wait for the science to mature to the point where we have biological ID cards. Don’t scoff at the idea. You don’t want the terrorists to win, do you? [MG]
“Anonymity is a myth if you’ve got richly detailed genetic information and access to a variety of databases,” said Hank Greely, a law professor at Stanford University who specializes in the ethical and legal implications of emerging biotechnology. Researchers need to ensure informed consent from participants, Greely says, even if that means telling them it may not be possible to protect their privacy.