(Arjun Walia) I joined the CE team in 2010 shortly after finishing university and have been grateful for the fact that I have been able to do this ever since :) There are many things happening on the planet that don’t resonate with me, and I wanted to do what I could to play a role in creating change. It’s been great making changes in my own life and creating awareness and I look forward to more projects that move beyond awareness and into action and implementation. So stay tuned :) [email protected]
Related Health Apps Are Bad for Your Privacy: 80% or More Share Your Data, Research Reveals
by Arjun Walia, July 28th, 2018
Two ‘shady’ companies are getting together, a giant pharmaceutical company by the name of GlaxoSmithKline, and 23andme, a privately held personal genomics and biotechnology company based in Mountain View, California. It’s a multi-billion dollar deal, and 23andMe will only collaborate with GSK on drug development projects for the duration of this deal.
What does this mean? 23andMe has been collecting people’s DNA data and are now about to start selling it. And you’ll get none of those billions.
Companies like GlaxoSmithKline, since their birth, have been developing harmful medications for years that kill at least 100,000 people a year in the United States alone. Countless lawsuits, injuries, deaths, and examples of scientific fraud on behalf of multiple pharmaceutical companies are extremely common. Yet they are still allowed to develop drugs and be trusted with public health.
Here is a great example. The meta-analysis sourced in the article explains how many of the studies were falsified, and data from clinical trials were not disclosed by the pharmaceutical companies.
Buy Book No Place to Hide: Edward Snowden, the NSA, and the U.S. Surveillance State
The DNA Game
As far as 23andMe, they’ve received criticism for multiple reasons. They collect our DNA via spit samples, and in return allow consumers to access information like ancestry, genetic predispositions and more. This can no doubt be helpful, and something many would want to try, but what happens with your data?
As a 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.
That being said, we do it with the belief that we can trust the corporation, and that there are no ulterior motives here. But now, there is complete transparency, many examples of fraud and deceit are now available for the public to see, (The Spider Papers, Dr. William Thompson, not disclosing information is a great example) if they chose to do so. This is what’s stopping our trust in the corporation, especially ones that get really personal, and ones that deal with collecting massive amounts of data. Not only are we being constantly monitored, and not only is our online data being collected and harvested to supposedly sell and make a profit, so is our DNA.
This is why more and more people are also refusing the products of deceitful corporations. So, there is a positive side…We are waking up.
According to GlaxoSmithKline, “The goal of the collaboration is to gather insights and discover novel drug targets driving disease progression and develop therapies.”
Again, can we really trust these companies? We’re talking about companies that cannot be held liable for harmful products, which allows them to be careless with their product. Yes, pharmaceutical companies are exempt from this! This is why they don’t get in trouble when people die via their medication, there are laws in place to protect them, like the National Childhood Vaccine Injury Act, and that’s just one example. Is this really their goal for collaboration, just as Facebook’s goal was to “make the world more connected.”
GSK, along with this collaboration, is also investing $300 million into 23andMe.
Concerns are still being raised by the mainstream, however. Peter Pitts, president of the Center for Medicine in the Public Interest, says that if a persons’ DNA is going to be used, that person should be compensated.
Again, it’s important to question why they are using our DNA, beyond the stated examples. It’s so hard to know given how much information giant billion dollar companies actually disclose.
Another very important point to consider, “The problem with a lot of these privacy policies and Terms of Service is that no one really reads them.” Tiffany C. Li, a privacy expert. “You are paying to help the company make money with your data.”
This current project isn’t the only one, 23andMe has already published a number of papers based on customer’s data alone, 100 of them. At the moment, they have millions of customers, this is troublesome.
Other Options For DNA Information?
So what about other options for getting the same types of services but without the data danger?
A new company called TimiCoin & TimiDNA is going to make this possible for users by allowing them to monetize their health data -and DNA data!
From TimiDNA’s press release:
1. Individuals who already have DNA results through another source can access easy-to-use tools within TimiPatient to download and securely store those results;
2. Those who have never taken a DNA test can establish complete control of their own DNA data through TimiDNA services. TimiDNA will provide consumers with a simple swab test kit and their DNA information will be securely stored;
3. Once an individual’s data is in the TimiPatient app, he/she will own it, control it, and have the ability to utilize it as an asset which can be monetized.
Bringing together a crypto token and the blockchain, TimiCoin 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.
It’s your DNA and your health data, you should own it, control it and monetize it -not these big corps.
About The Author
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