Our DNA Is Being Sold

 
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 about your genetic data… is that 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.

Company Disclaimers

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 a recent 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

Research conducted on behalf of “academic, nonprofit and industry organizations” reminds of 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. Selling health data around the world is already a multi-billion dollar industry, much like how your data collected from Facebook is. 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. 

yogaesoteric

June 5, 2020