Balancing between science and health advancement and privacy protectionA new study has demonstrated that male volunteers who provide their personal genetic materials for undertaking scientific research shouldn’t be very confidence about the anonymity of the identity being guaranteed. This is because their privacy faces the risk of being breached. According to a new report, researchers claims to have succeeded in determining the identity of about 50 persons who had previously undergone through genome sequencing. However, only males were identified directly since scientists used only the Y chromosome information.

Steps of identity determination

The first step involved pulling the anonymous information from the Internet which is unique to every individual. Genomics right now has databases, which are available publicly and contains thousands of genomes. However, they don’t have explicit identifiers, in that the person’s surname and first names are not available. What this research showed is that it is possible to get a genome for the research database and then do an analysis of Y chromosome if the genome belongs to a male.
Erlich who is a distinguished fellow at Whitehead Institute for Biomedical Research was able to do but what about those without any specialized knowledge? Doing this of course requires some skills. While there are some tools available, one needs to know exactly what needs to be done and might not be an easy one as such for a layperson. There is surely a learning curve involved but no lab is needed as you just need a PC that has Internet connection. Step two involves genetic genealogy sites like the Family Tree DNA where you can search for your ancestors. Once the Y chromosome has been analyzed, you will be going to another recreational genetic genealogy database. Some databases have search engines where the Y chromosome markers can be plugged as you search for matches.

Making the identification

When the donor’s anonymous genome specimen is somehow related to an ancestor on the search site, their last name will appear. But this isn’t their brothers but the second cousin. It is even possible for it to propagate far on the family tree that has connection for Y chromosome and surname. This method cannot be used to identify women because despite them having just X chromosomes, it is also very rare for them to pass on their surnames via generations.
This study has drawn debate on how a balance can be achieved between privacy protection and making advancement in the field of science and health. Locking the data down or tightening security isn’t always a good solution to this. The genomic databases are a great tool where scientists from everywhere can get their much needed knowledge. There is need to ensure that those participating in the genome studies are assured of their privacy even in times of the current advancements in the world of IT.