The rise of direct-to-consumer (DTC) genetic testing companies has happened quickly. Companies analyze individuals’ DNA and can provide information regarding a person’s genetic ancestry or possible genetic risk for certain health conditions. In addition to companies that sequence individuals’ DNA directly, more companies now offer their own analysis or digital health services to consumers who upload their genetic information. DTC genetic tests have limited regulation, and the growth of the DTC genetic testing industry has resulted in vast databases of consumers’ genetic information, raising serious privacy concerns. For instance, 23andMe provides both ancestry and health testing options to its users based on a saliva DNA sample. Customers have been signing away access to their own genetic data, often without realizing it, and several companies have profited hugely as a result.
In an age of personalized medicine, access to genetic data is a valuable material for pharmaceutical companies that are developing new drugs and therapeutic agents. In the medical field genomic data is used for customized patient diagnosis and treatment. On the one hand, there is “nothing criminal” about it, but on the other hand, are we okay with potentially reckless usage of own genetic data by 3rd party companies?
The other problem occurs when there is a legal need to send genetic data from A to B. Despite the high utilization value of genetic data within healthcare, it is not widely shared due to the sensitive nature of the information to patients and the risk of privacy breaches.
Obviously the process of transferring such sensitive data should be regulated by law first but a technical solution already exists.
Whatever economic role bitcoin will play in the future, the underlying technology that powers it and other cryptocurrencies – blockchain – has attracted a lot of attention from a number of industries, including biotechnology and pharmaceuticals. In a nutshell, blockchain is a type of information technology that does not rely on one central server, but instead all users are part of the network, forming a “decentralized” server that is much more secure. It allows new information to be shared between two parties in a safe and anonymous way.
Using genetic data and the blockchain network, it is now possible to send anonymous genetic information around the world extremely quickly in a secure way. To date there is already a number of companies that use blockchain and genomic data science to empower the genetic testing consumer to control the use and sale of their own data.
Ideally there would be a system based on a consortium blockchain model that will only allow invited parties – such as pharmaceutical firms, research institutes, hospitals and genetic analysis startups – to run as nodes on the decentralized network, limiting who can access the data.
However, we should always remember that once you give access to your genome data, there is no magical self-destruct button. Not even a blockchain can prevent that from happening. So you still have to be careful about whom you trust with your DNA.