Computers, Privacy & the Constitution

Why You Should Think Twice About Getting a DNA Test

-- By JessieChao - 12 Mar 2021

Rise of at Home DNA Testing Introduction

Consumers can now learn about their origins and health threats for as little as $99 to a few hundred dollars thanks to the growing popularity of personal genetic-testing kits. These DNA testing companies are quickly growing. However, one should be aware that there are many risks that come with giving your DNA information to a company. The Federal Trade Commission investigated Ancestry and 23andMe because of their policies on sharing information with third parties and how they handle genetic data/personal information. One’s genetic information is a unique identifier so one should think twice before diving into the unknown of DNA testing companies.

Privacy Concerns of DNA Testing

Law Enforcement Might Request Access to The DNA Database

There are a plethora of privacy concerns that indicate that one should steer clear of ancestry DNA kits. The courts and law enforcement know that these companies have your DNA and they might want it in the future. In fact, the Golden State Killer case was solved after decades of investigation with the assistance of DNA from a genealogy firm. Although catching a murderer is a positive thing, law enforcement's ability to target one’s DNA through these companies is a major concern. Using DNA from a family member, law enforcement was able to track down the perpetrator. When one gives a DNA testing company one’s genetic details, it also gives them information about one’s relatives, including distant cousins. When one’s family, including distant relatives one might not even know, provide their DNA, they are also providing genetic information about you. While DNA testing companies emphasize that data is de-identified to protect privacy, data shared with researchers can often be re-identified.

DNA Testing Companies Are Vulnerable to Hacking

Hacking, although not a unique risk to DNA testing companies, is a risk nonetheless. MyHeritage? was hacked which has more than 92 million accounts dealing with DNA and there could be more in the future. One’s information can also be exposed due to changes in the company or the company’s privacy statement. What happens to one’s data when the company is sold, bought, or goes out of business? Unfortunately, these businesses have no restrictions on what they can do; all they have to do is mention it in their privacy policy, which they can alter at any time. If the DNA testing company alters their privacy policy one may have to consent to it again.

DNA Testing Companies Sell Customers’ DNA

Alarmingly many consumers who chose to use a DNA testing company also choose to share their DNA with third-parties. The companies state that they will not share the DNA results unless it is expressly consented to. One might think DNA testing companies make most of their profits from providing genetic information to the customer; however, the money is mostly made from selling their customers genetic information. Merely ten percent of DNA testing companies demolish the DNA sample meaning by in large one’s actual saliva is shopped around. In fact, over 80 percent of 23andMe customers consent to it. Many people opt in for altruistic reasons such as to help develop medicine for diseases or to help nonprofit organizations. If one’s DNA can help cure or find the cause of a disease most consumers want to be a part of that process. This means that a pharmaceutical company could develop a drug based on submitted DNA. Even though the customer who opted in to sharing their DNA might have done so for altruistic reasons, the customer has no control over what the pharmaceutical company does with the information. For instance, the pharmaceutical company could choose to create a drug that does not better the world and sell it for a huge profit. Further, if one wants to opt out of sharing one’s genetic information with third-parties it is not very simple. There is not a way where one can verify that the company has destroyed the genetic sample or deleted the genetic profile.

DNA Testing Companies Are Not Reliable

Shockingly, depending on the DNA testing company you use you will get different results. Each company uses AIMs which are ancestry informative markers to determine the results of the customer. Each AIM is a proprietary DNA database of all the samples thus each company uses different pools of DNA for their results. Essentially there is very little upside to these DNA testing companies and a massive downside potential.

A very good first draft. Some links to good-quality sources to support your factual statements would be useful. You can significantly tighten the writing: cutting 20% of the current verbiage is feasible, which would give you more space for your own ideas.

Substantively, I think the piece would improve if more attention were given to the ecological character of "one's own" DNA. The genetic privacy of my family for the next three generations was carelessly blown by my first cousin, a very smart and well-intentioned fellow, with a technical PhD, who did not consider the consequences for everyone else in his family of an impulse to find lost relatives. You discuss the issue, briefly, but its significance of an illustration of the ecological rather than transactional nature of privacy problems would justify more attention.

You do not, on the other hand, offer any credence to the claims of value in genetic information for individual and public health. If there are in fact very few such benefits, it would be helpful to have more than an assertion to back the claim.

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r2 - 05 Apr 2021 - 12:41:55 - EbenMoglen
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