Unless you’ve been living under a rock for the past few years, you’ve noticed people are increasingly paying for those home DNA tests. Millions of them were purchased as gifts for the holidays and with the cost of genomic testing dropping, we will undoubtedly see them grow in popularity in the coming years.
Whether the motivation is uncovering your heritage or getting ahead of inherent health risks, having access to genetic information can be beneficial for you and your doctor, and it has tremendous value for the advancement of scientific research.
That said, there are some inherent risks with using an off the shelf DNA test kit from most of the large DNA testing companies unless you take steps to opt out of their data sharing practices.
Companies like Ancestry.com and 23andMe have earned hundreds of millions of dollars selling their customer’s data to big pharma companies, and those partnerships mean companies like GSK and Genentech can use those DNA databases for for-profit research. That in itself raises a number of questions. For starters, should DNA testing companies be the ones who profit from your genomic data or should the owners of the DNA be compensated for its use?
According to 23andMe CEO, Anne Wojcicki, the goal of the company is for customers to own their data and become aware of any genetic risks. It’s empowering—before these home kits became widely available, you’d need to get a genetic test from a doctor who would then deliver that information like routine blood work.
This information allows people to take ownership of their health. Information allows people to be proactive about screenings for diseases like Cancer, Parkinson’s and Diabetes and mitigating other risks.
According to the BBC, the latest health and wellness trend involves taking a DNA test to learn how we respond to certain foods and types of exercise.
The article cites examples like 56-year-old Mandy Meyer, who learned that refined foods and caffeine don’t work for her body. She also found out that endurance training will give her the best workout.
There’s also the genealogy factor—which appeals to a lot of us, who wish to find long-lost relatives across the globe—or nearby.
In any case, there are clearly some upsides to spitting in a tube for a hundred bucks.
There’s is a shortage of genomic data out there and pharmaceutical companies, universities and other independent research labs are eager to get their hands on a broad range of genomic data profiles and they are willing to pay for them.
Researchers have long been lamenting the fact that the bulk of the people submitting DNA have been white. Offering payment to people from more diverse backgrounds may entice them to submit their DNA.
Many people have concerns about their privacy and the broad implications of giving their genetic data to a massive company, and rightfully so.
As you might imagine, there is a long list of risks that come attached to submitting your DNA for testing.
Will hackers gain access to this information? If so, the prospect is scarier than the latest data breach—you can’t change your DNA like you can change your password. What if employers or creditors gain access to this information?
The good news is, you can not only protect your data, you can control who has access to it and you can even get paid for it.
Since the capture of the Golden State Killer, people have had a lot of questions—namely, what, exactly, are you signing up for when you buy a DIY DNA test?
Sure, the idea that DNA can catch a serial killer is pretty amazing, and a lot of people are using their DNA test results to find biological siblings or even parents, but these use cases open up a whole other can of worms.
And since so many of us have sent off our samples in hopes of uncovering more about ourselves, it raises some questions.
Namely, who stands to profit from your personal information or and who has access those cellular level details? Giving scientific researchers and doctors access can not only benefit us individually, helping researchers find better treatments and cures has benefits for all of humankind. But, what about those with different intentions for accessing your data. While 23andMe and Ancestry.com both have issued statements that state that law enforcement must issue a court order before they hand over records, there are people out there who believe information should be available to say, an employer or insurance company.
Oddly enough, no one actually owns genomic data. And even though there’s nothing more essential to, well, your “you-ness,” policymakers in Washington recently contemplated making genomic data available to employers—which, is frankly, insane.
There’s no definitive author or creator of DNA—as such, you can’t copyright your genome. So, some day your DNA and all of its baggage could go the way of stock photos or public social media profiles.
And while the best way to avoid any of the legal and ethical pitfalls associated with providing your DNA to one of these services is not to engage, there are many reasons to expose yourself to the risk. You can have the best of both worlds though, by either buying your DNA test kit from a company that does not sell your data, or you can simply opt out of data sharing practices if you are using a DNA testing company that does, by default, sell your data…even if you’ve already been tested.
For those who want to know if they’re at risk of breast cancer, Parkinson’s disease, diabetes or are a carrier of a myriad of other genetic illnesses, DNA testing is a worth looking into.
It’s empowering to learn more about how you can mitigate some of the risks that lie inside your DNA.
Yet, the current model isn’t working because the testing companies are not just profiting from selling you a DNA test kit, but they are selling your data to the highest bidder, and data owners (consumers) have no control of who has access to their most sensitive data or how securely it’s being stored.
23andMe users may choose to opt out of data sharing, but most consumers don’t read or understand the privacy disclaimer that goes along with the profits. Whether you intend to make your DNA data available for scientific research or not, if you want to keep your data private and secure, you’ll want to take the time to read the fine print from the testing company and opt out of their data sharing practices.
To combat the information gap and privacy concerns associated with testing, Encrypgen has brought the DNA data business to the blockchain. In EncrypGen’s Gene-Chain DNA Data Marketplace, DNA data holders (you) sell their de-identified genomic data directly to DNA data buyers (research labs) in peer-to peer transactions verified on EncrypGen’s proprietary blockchain. Meaning, customers are compensated for their contribution to science, and they can rest easy knowing that their name and other personally identifiable information has been stripped away from their raw DNA data file and other info in their Gene-Chain profile.
Learn more about EncrypGen’s Gene-Chain DNA Data Marketplace by visiting the website or catching up on Telegram. Take back the power (and profits) from your genetic data by creating a profile on My.Encrypgen.com.