The concerns mentioned by Ms. Kolata address only some of the issues raised by the recent research in genomics. The potential for mining genomic information is only now beginning to be appreciated. In addition to identifying anonymized subjects, one can also use genome sequences to potentially characterize heretofore anonymous clinical trial subjects to a much greater degree than initially appreciated. With the use of data mining techniques and algorithms for correlating other data sets, a publicly available genetic sequence might reveal a lot about the individual, their ancestry and disease risks. This information will affect not only the individual themselves, but also their current extended family and future descendants A decision to make your genomic data publicly available, without the appropriate legal regime in place to protect that data, may have irreparable repercussions for generations.
Dov Greenbaum and Mark Gerstein
Unpublished letter in response to
Gina Kolata, "Web Hunt for DNA Sequences Leaves Privacy Compromised," NY Times, Published 1/18/2013