Amidst the rise in popularity of companies who take samples of our DNA in order to provide us with information about our ancestry and health risks, there are growing concerns that are not immediately apparent to the average consumer. While most are just happy to be getting exotic information about where they came from and what they should be watching out for health-wise, all for little more than a few hundred dollars, not many consumers are seeing this as a threat to their privacy, and more specifically, as a threat to their control over the most essential information about their unique personal identity–their DNA sequences.
“The key thing about your genetic data … it is uniquely yours. It identifies you, so if you are going to entrust it to a company, you should try to understand what the consequences are,” said Jennifer King, director of consumer privacy at Stanford Law School’s Center for Internet and Society, whose research on the issue and interviews with individuals shows a lack of consumer knowledge.
Of course, companies who deal in such services will do all they can to convince consumers that their data is safe and secure. But as this CNBC article notes,
Companies in this space, including 23andMe, Veritas Genetics and Ancestry, have a good reason to protect your DNA — their business future depends on maintaining the trust of consumers. But there are thorny issues related to genetic privacy that still today don’t have easy answers or iron-clad legislative protections. And regulators aren’t convinced they are doing right by consumers. A recent Fast Company report indicates that 23andMe and Ancestry are being investigated by the Federal Trade Commission over their policies for handling personal info and genetic data and how they share that info with third parties.
All of these companies say they have clear policies that they will not share your DNA with any third-party unless you explicitly consent to it:
23andMe provides consumers the choice of opting into research conducted on behalf of academic, nonprofit and industry organizations. They also offer an option to consent separately to specific disease studies in which their DNA is used in conjunction with for-profit drug companies, such as the Parkinson’s disease research conducted with Genentech and the lupus and IBD research conducted with Pfizer.
Abuse Of Private Data
Hearing about research conducted on behalf of ‘academic, nonprofit and industry organizations’ reminds me of the article I wrote on Cambridge Analytica’s fraudulent effort to characterize themselves as an academic organization while mining people’s private Facebook information to target them with ads for the 2016 U. S. Presidential Election. Facebook knowingly sold the information to Cambridge Analytica demonstrating that, when it comes to big companies and corporations, the only thing we know for sure is that money and profit will eventually trump respect for the privacy of people’s information.
If there is money to be made by selling our personal information, corporations will do whatever they can to skirt around privacy agreements. They may even flat-out change their policy and inform us in a pages-long letter that they know no one reads and will simply click the ‘accept’ button. In the current environment, it is wise to be extremely cautious when deciding to consent to having one company share our information, especially our genetic information, with third parties.
Think about it. As technology evolves, surely there will be ways our DNA codes could be used in the future that we would not agree with. But once we have given our consent to the use of this most private information, we can no longer guarantee what happens with it. Wouldn’t it be great if WE had control over our genetic information, encrypted and only accessible by us, to use and share in a manner of OUR choosing?
If we so choose, we may even be able to profit from it. Did you know that health information is a commodity that is already collected and sold via third-party companies? Selling health data around the world is already a multi-billion dollar industry, much like how your data collected from Facebook is. But how do we get back control of our DNA information, which could be our most valuable resource about who we are?
Think outside the box. Think blockchain. Think Timicoin.
Timicoin is a platform bringing together a crypto token and the blockchain and is pioneering the tokenization of health information, including your DNA sequencing and other genetic information, through a decentralized blockchain ecosystem. They promise to allow users to monetize their own data, have access to their health information whenever they need it and verify that it is accurate.
The Timicoin platform is built on their own custom blockchain and it’s already fully functioning. This means that in a short time, you will be able to begin using Timicoin’s blockchain to monetize your health data. For more information, please refer to this earlier CE article. You can also read Timicoin’s White Paper here.
Shift In Business Paradigm
Analysts believe that Healthcare information on the blockchain will grow aggressively in the coming years given the global need for ease of sharing healthcare information. Secure storage of our DNA information is only one part of Timicoin’s larger endeavor to make your healthcare information available globally and instantaneously as needed, but only with your personal consent.
It represents a new business paradigm, whereby information is centralized in terms of permitted access but decentralized in terms of who has the power over the information. No longer will masses of valuable personal information be owned and controlled by large corporations, but rather will be owned and controlled by each individual, not only giving the individual the ability to monetize their personal information themselves, but also securing the validity of that information through personal verification and safeguarding against fraud. Supporting blockchain technologies is supporting individual empowerment in our society, a move that undoubtedly scares the power structure at top levels of our current corporatocracy.