RICHARD's desk: Exploring your past or your genetic makeup may put your privacy and confidentiality at serious risk

Gene vacuuming companies
Your privacy and confidentiality at serious risk

Many people curious about their ancestors or their genetic makeup are using companies such as AncestryDNA ( also known asAncestry.ca ) and 23andMe . These companieso help individuals learn about their ancestors and gives them genetic information about themselves. However, the companies skirt the edges of privacy and confidentiality integrity.

[Disclaimer: In no way are we accusing or implying that these companies are acting in a fraudulent way. They deliver what they promise to paid clients. However, we question the professionalism of how they use the data they collect from you.]


AncestryDNA sells a kit that collects data from a sample of your saliva, genetic data. That in of itself does not seem threatening or risky. However, where AncestryDNA may violate your privacy and confidentiality when they sell your data to other companies without obtaining your clear and specific permission to do so.

The company has a fine print disclaimer that you must sign giving them proprietary claims to your submitted data. In other words, they can use your data as they wish. The company claims it will manage your information professionally and properly.

So for approximately $100 Cdn, you sell your information to this company and they, in turn, sell it to other companies, as many and as often as they can and you are not entitled to any compensation or remuneration.

The Immortal Life of Henrietta Lacks
Read the book, or see the movie, “The Immortal Life of Henrietta Lacks,” to learn how one poor, uneducated family was exploited incredibly when the cells of a family member were sold all over the world to thousands of companies, scientific labs and medical researchers. The latter discovered many medical breakthroughs from which they profited incredibly and the family received no remuneration, no credit, nothing. [ Henrietta Lack’s descendants may have ultimately won minimal compensation through the courts. ]

23andMe is another company that sells ancestry and genetic related kits. Again, the same story as with AncestryDNA applies, pay a fee to join from $129 -$249 US and you buy into a contract with the company where they will return your genetic information but they also get the use of that data as they wish. This means they can sell it to whomever and as many other companies as they wish.

On the edge of ethical principles
Legally, these two companies, AncestryDNA and 23andMe, should not be accused of doing anything fraudulent. However, there is a question of ethical violation and questionable professional integrity. Neither company clearly spells out that client genetic information is the property of the company which in turn can do as it wishes with that information.

The last word
If you are curious about your ancestry or your genetic makeup, feel free to purchase the services of either of these companies. They will deliver what you pay for but they will also take a little more from you than you might be willing to give.

Additionally, give any company or any public institution such as a library offering connection with either AncestryDNA (Ancestry.ca) and 23andMe serious second thoughts. You will be getting more than you bargained for.

 

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