I Say No Way to DNA…Testing, That Is

Growing up, I was taught that it is not ladylike to spit. So, from that perspective alone, I have always been a little leery of DNA testing.

However, decorum aside, I have quite a few reservations about voluntarily handling over my DNA—the very essence of what makes me, me—to some faceless entities. Call me skeptical or even paranoid, but I just do not trust corporate and/or government bigwigs enough to believe that my DNA data will remain mine alone and that someone, somewhere is not making a buck off of all that information or using DNA in some big brotherly manner.

And it seems that I am not the only one wary about DNA and privacy. Here are several pieces on this very subject:

What DNA Testing Companies’ Terrifying Privacy Policies Actually Mean

You probably wouldn’t hand out your social security number without having a pretty good idea of how that information was going to be used, right? That would be dumb. It’s extremely sensitive information. And yet, the consumer genetic testing market is booming thanks to people readily giving up another piece of their identity: their genetic code. (Read more here.)

Who Owns Your Genetic Data after a Home DNA Test?

AncestryDNA’s pitch to consumers is simple enough. For $99, the company will analyze a sample of your saliva and then send back information about your “ethnic mix.” While that promise may be scientifically dubious, it’s a relatively clear-cut proposal. Some, however, worry that the service might raise significant privacy concerns.

After surveying AncestryDNA’s terms and conditions, consumer protection attorney Joel Winston found a few issues that troubled him. As he noted in a Medium post last week, the agreement asserts that it grants the company “a perpetual, royalty-free, world-wide, transferable license to use your DNA.” …According to Winston, “With this single contractual provision, customers are granting Ancestry.com the broadest possible rights to own and exploit their genetic information.” (Read more here.)

Can Ancestry.com Take Ownership of Your DNA Data?

Signing up for Ancestry.com’s DNA test requires that you license your DNA data to them, and this data could potentially be shared by them with third parties. (Read more here.)

If you could know whether you were likely to develop a debilitating, untreatable disease at age 50, would you want to? 23andMe is offering you that opportunity—but they’re not going to ask you that question. Not really.

23andMe has handed out genetic information like candy for over a decade without much care as to how their customers handle it. True, most of the time they’re selling pretty innocuous stuff…. Those genetic nuggets are easy to digest and often pretty fun. They probably have little to no impact on your daily life.

But now things are changing. The Food and Drug Administration just ruled that 23andMe—and by extension, other genetic testing companies—can sell you tests that determine your likelihood of something more serious than an unfortunate sneezing habit. Now they can tell you if you’re prone to developing Alzheimer’s or Parkinson’s disease, along with eight other disorders with genetic underpinnings. That’s great news for 23andMe, who have been fighting for years to sell customers this information. It just might not be such great news for you. (Read more here.)

23andMe Is Selling Your Data But Not How You Think

Embedded in our genetic code is all kinds of sensitive data that could be compromising in the wrong hands. Without genetic privacy protections, the information stored in our genes might be used to discriminate against us or send us targeted ads. For these reasons, some have said we should skip out on consumer DNA tests if we value our privacy. Last week, after the FDA gave DNA testing company 23andMe the greenlight to offer consumers disease risk assessments, there was a new wave of warnings….

Let’s be clear here. 23andMe definitely is selling your data to third-party companies, research institutions and nonprofits. But it is not selling your genetic data to those entities in order for them to sell you things. It is selling de-identified, aggregate data for research, if you give them consent. (Read more here.)

The Privacy Delusions of Genetic Testing

Genetic testing promises a revolution in healthcare. With just a few swabs of saliva, diagnostics can provide an unprecedented look into a person’s family history and potential health risks. Within a decade, global sales of genetic tests are expected to hit $10 billion. Direct-to-consumer companies such as 23andMe and Genos have proven particularly popular, with tens of thousands of people purchasing at-home testing kits every year.

But the industry’s rapid growth rests on a dangerous delusion: that genetic data is kept private. Most people assume this sensitive information simply sits in a secure database, protected from hacks and misuse. (Read more here.)


Categories: Miscellaneous Musings | Tags: , , , , , | 6 Comments

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6 thoughts on “I Say No Way to DNA…Testing, That Is

  1. I agree that we probably don’t have much in the way of privacy anymore. I suppose DNA could be used for nefarious purposes (like the insurance thing – but the ACA ended my health insurance, anyway). My goal in life is to not stress too much about anything, especially Big Brother, until I am confronted with the ugly reality.

    Liked by 1 person

  2. Yes, the Henrietta Lacks book was fascinating. When I had a surgery, and they sent my tissue to a lab for tests, I was not really informed about it. I think I found out when I got a bill for the test. That is wrong.

    Liked by 1 person

  3. Carol Barclay Radowenchuk

    Oh, Cuz, you are certainly not alone in your thoughts. If you have not read the book “The Immortal Life of Henrietta Lacks” I highly suggest. I’m not sure if the movie did the book justice as I did not see. I totally agree that our government and big pharma fail to have our best interests in mind. Just reading some medical history will confirm.

    I guess I am too old to care what anyone does with my DNA? I think there is a bigger problem in the medical field than insurers jacking up rates or denying coverage. But I might be the minority in my thinking. I think we are way over doctored, pilled, and tested.

    Thanks for continuing to share your blog! I don’t comment a lot but enjoy reading them all!

    Liked by 2 people

  4. Very thought provoking….

    Liked by 1 person

  5. Thank you, Carol, for taking the time to comment! Yes, I do agree that we as individuals are tracked on a daily basis—mostly via GPS movements and purchase patterns; some people more than others. (For example, I have never owned nor do I ever want a cell phone, but I am an anomaly, I know, and that is another story…)

    I would never tell others not to DNA test if it is their choice. Many people have found these services beneficial. The key is being well-informed, weighing the pros and the cons before making an educated decision that is the right for them.

    Personally, I found these articles (especially the ones from Popular Science and Forbes magazine) reassuring because they show that I am not the only one who is apprehensive about how this information can be sold and misused, especially when an insurer might use DNA findings to deny coverage or jack up rates on an individuals who might be predisposed to a condition or disease (which may or may not actually come to fruition).

    Thanks again, cuz, for stopping by!


  6. Carol Barclay Radowenchuk

    Oh, you don’t need to do a DNA test to absolutely know that there is no such thing as privacy. If you use a cell phone or drive a car, you are being tracked. If you use a debit card or swipe that card buying groceries in Giant Eagle, you are being tracked. I tested through Ancestry and knew all these things but I didn’t or don’t care. I have met folks that I would never have met before and to me that is worth it. Hi Cuz! But to each their own, I guess.

    Liked by 2 people

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