What secrets does our body’s genetic code hold? The very building block of what makes us unique, our DNA holds invaluable information. Our genetic material can reveal who we are, where we came from and most importantly where we are going.
The secrets that lie hidden in our genome can be worth millions of dollars to research and pharma companies that are tapping into these insights to create new products, which makes it all the more important that this information is protected and utilized for the benefit of its owners.
With the current state of the industry, while DNA sequencing technology is available, the companies that are providing this service are not being entirely fair or transparent about what happens to that genetic data once it’s obtained from their customers.
Gizmodo revealed how some of these firms have what they described as ‘terrifying privacy policies’. They estimated that the consumer genetic testing market would be worth US$ 340 million by 2022. Describing the present day scenario Gizmodo reported Consumer Protection Lawyer Joel Winston as saying:
“When it comes to DNA tests, don’t assume you have any rights.”
There is a Better Way
Shivom, a project that aims to allow users to retain power over their genomic data while advancing genetic medicine, has taken an alternate approach. They are utilizing blockchain technology that will take care of issues such as data’s ownership, its integrity and secure authentication.
In conjunction with smart contracts users would also be able to fine tune access and allow for the management of complex data rights when it comes to their genomes. By putting the people, whose samples are collected in charge of the decision to share their DNA information, and by making them participants in the whole process by incentivising them to share information, Shivom will provide greater opportunities to treat as many as 7000 rare diseases as well as major global killers like cancer, cardiovascular diseases and diabetes.
In this regard Shivom’s Co-founder and COO Gourish Singla says in a press release:
“We view the future with consumers owning their own genomic data.” He adds, “Most of us are oblivious to the implications of giving away personal information, and the recent Facebook and Cambridge Analytica issue has demonstrated just how important it is to be aware of who owns your data and what they are doing with it. This is why we are excited to be able to put the ownership of an individual’s DNA data in their hands.”
An Unprecedented Scale of Data Collection
For true preventive and precision medicine to become a reality, healthcare has to get a complete makeover, which requires work at an unprecedented scale. Shivom are in the process of building the world’s largest genetic database to further the work of changemakers in the healthcare and biotechnology industry, and alongside government initiatives.
As a huge step forward, they have already started working on a never before seen scale. Shivom will be collaborating with the Indian State of Andhra Pradesh, which has a population of nearly 60 million people, and as part of the collaboration, they will be establishing a development centre at Fintech Valley in Vizag.
This project will improve the State of Andhra Pradesh’s quality of healthcare services and personalize care for the State’s patients. Considering that to date only 10 million people have been genetically sequenced globally, this will be the first attempt to harness such a vast amount of genomic data.
Shivom has also formed a partnership with publicly traded (Nasdaq: Gene; ASX: GTG) Genetic Technologies Limited (GTG), which would allow both partners to utilize each other’s expertise. GTG will be able to access Shivom’s large data repository for development of predictive cancer tests, while Shivom will be able to make use of GTG’s accredited laboratory facilities in the United States and Australia.
Public Participation in Healthcare
To make all this possible, it is necessary to stimulate the public to participate in their healthcare, particularly when it comes to services such as genome sequencing. A sense of continued ownership would assuage public fears about sharing data, and empower people to contribute to the future of medicine, something Sally Eaves, the co-founder of Shivom touched on in her TedX talk. This is why the public is being given the opportunity to participate in the crowdfunding efforts and join the ecosystem as the project takes off.
Registration for the pubic pre-sale, which will begin on April 16th and last until April 22nd, is taking place now on the project’s website. The campaign has received enthusiastic response from investors during the private sale stage, and is due to gain further momentum as the public sale draws near. Those interested in contributing should read the company whitepaper, which contains further details about the project.