CAN PEOPLE BE IDENTIFIED SOLELY FROM THEIR GENOME SEQUENCE?
Identify theft is a significant concern in the financial sector as compromise of the privacy of financial data can create personal havoc. Is this a significant concern for genomic information? Genomic sequencing has the potential to reveal one’s ethnic background and many other personal details, including one’s actual identity. A relatively recent study revealed that one could pinpoint the geographical roots of Europeans to within 200 kilometers based on a small snippet of their DNA information. In fact, it is possible to directly identify people based on their DNA sequence when correlated with other publically available information. A recent study investigating a number of released genome sequences coupled with other public information available on the Internet showed that the personal identity of some of the individuals whose genomes were sequenced could be discovered. As more sequences become publically available, this number of identifiable genome sequences will increase greatly.
This raises the possibility that people who leave anything in public that contains their DNA, for example, a hair sample or skin material, might also be identifiable, much like what happens with fingerprinting. Indeed, it has been reported that criminals have been identified from traces of such information left behind at crime scenes. It also means that people who have disclosed genetic information to others can have their information matched against existing databases and thus be identified. Moreover, a person’s genetic information can be used to search a disease database (e.g., Alzheimer’s) and reveal whether they or a relative are presently in that database. Thus, in many cases, databases may need to be safeguarded for the types of information that are made publically available or for the linkage of specific disease information to individual genome sequences.
Most importantly, before people consent to have their genome sequences contributed to such disease databases, they need to be thoroughly educated about possible ramifications. We have found that most people with diseases, as well as many healthy people, after being counseled about their options and possible ramifications, still do want to share their genomic information to help solve and treat diseases.
Privacy concerns are not limited to genomic information. The ability to identify people using information from other omes (transcriptomes, proteomes, metabolomes, and microbiomes) in which there is a distinct personal signature will also be feasible someday. Such developments could result in a significant invasion of privacy. As with fingerprinting, however, it remains to be seen whether people will take advantage of such information for nefarious purposes.