While there are obvious concerns regarding the collection, storage and distribution of any type of personal data, the information revealed by genomes is especially concerning for many people.
Genomes contain intimate content, which holds the ability to link you to relatives. With companies becoming more connected and privacy policies sometimes proving ambiguous, it is natural to worry about the accessibility of such personal data.
Genetic databases are an integral part of our society’s functionality today, with medical genetic databases and law enforcement DNA databases being regularly used.
These databases are used for different practical purposes and help to increase the safety and health of our world. Additionally, these storages are well protected and regulated in licensing their accessibility.
With technological advancement comes new possibilities, with ambitious pioneers eager to push the boundaries. Many global initiatives have been established to play around with genome possibilities, with both governments and private organisations investing billions into the subject.
However it doesn’t stop there. Individuals have been exposed to DNA testing opportunities, with direct-to-consumer companies rapidly expanding and promoting the offering. Namely, Amazon, an internationally-recognized electronic commerce company, has reported its DNA testing kit as one of its bestselling items.
The curiosity and excited of new opportunities urges individuals to get involved, which is made particularly easy through e-commerce platforms today.
With all the hype that governments, private sector companies and individuals have generated, genome sequencing is unsurprisingly rising exponentially. The future of genetic sequencing is unknown, however some studies suggest genome sequencing may become as standard as a routine process at birth.
It is obvious that genomes have monetary value, given the information they hold and the possibilities they introduce.
We have already heard of the commercialisation of genetic data from private companies to pharmaceutical companies, so it is logical that similar business would extent to digitized genomes. This becomes a basis for trade, coinciding with the idea of ‘genetic currency’.
Solutions to improving privacy
While the obvious solution for many people is to make genomic data anonymous, unfortunately this is not as simple as it seems.
Genome data provides the opportunity to connect relatives using only ancestry databases which are readily available to the public. This means there are limited barriers to collecting further information once the complete genome is obtained, as well as difficulties stopping it.
However, with the rise of artificial intelligence, it is likely that our understanding of such matters will improve greatly and anonymity possibilities may be discovered.
Australia has established a National Health Genomics Policy Framework, creating guidelines for the period between 2018 and 2020. While this will help to regulate the distribution of genomes, its focus on medical research means law enforcement and consumer matters are neglected.
Genomic databases can be an extremely beneficial tool for protecting and improving society, if used correctly. However it is clear that authorities need to act quickly, to ultimately determine who owns our genetic data and who has the right to access it.