The NYT headline, “Web Hunt for DNA Sequences Leaves Privacy Compromised,” blows this out of proportion.
Wired’s article “Scientists Discover How to Identify People From ‘Anonymous’ Genomes” is only slightly more helpful. The key issue here is not that the DNA sequence of the participants itself was itself a magic fingerprint, but that when that information was combined with other genetic information of other people (in some cases, probably including the study participant) disclosed elsewhere on other terms, then it was possible to find people.
Indeed, there’s nothing magical here that hasn’t been done far more invasively by traditional marketers collecting personal consumer data from different sources and aggregating it.
So what’s the point of knowing who I am if you have my DNA sequence? There’s a mention in Wired of a teen finding the identity of his sperm donor father. In that case, the teen had his own DNA and the father had put his DNA on a genealogy-related website. Well, there you go. That’s like putting your picture on LinkedIn and being surprised when someone matches your high school yearbook photo to it.
Unfortunately*, neither of these articles explains, or even hypothesizes in any way why this is a horrible thing. The NYT suggests that “severe penalties could be instituted for those who invade the privacy of subjects.” Usually we identify harms before proposing penalties.
People who disclose information know, or should know, that others will use that information and almost certainly in combination. People who buy drug-related products with credit cards and surf drug-related websites should not be surprised when an employer decides they might be smoking pot. Target, as an example only — we should all be SURE that every business that sells to consumers does this, recently got some unexpected attention when its data mining practices revealed that Target knew a teenaged girl was pregnant before her father did.
By the way, in response to this study, the PGP reminded participants that this is obviously not an issue for us and of the rationale for not trying to protect sequence data.
Disclaimer: my position on the value of deliberately destroying any privacy of my DNA sequences is on the record: I’ve volunteered for the Personal Genome Project and will volunteer the DNA of my two boys and as many family members as they will take. Research requires data.
Ignorance is submission. Knowledge is power. Action is dignity.
- Wordle tells me unfortunately is a word I use an awful lot. I’m not sure that’s a good thing. I note it here for the record and won’t edit that one out of this post. I expect it won’t appear as often in future posts.