Some people eat, sleep and chew gum, I do genealogy and write...

Tuesday, September 17, 2019

The History of the Development of Genealogical DNA: Part Thirteen: Privacy and DNA Testing

In my early years, I lived in a small town with a shared line telephone system. If you wanted to know the news of the day, all you had to do was pick up the phone receiver and listen to what was being discussed. Later on in life, I lived in Panama City, Panama. Parts of that city had an average room occupancy rate of about 50 people per room. Imagine 50 people sharing the same common room and using the same bathroom facilities. Some of the people I knew personally were slightly better off, they only had 15 or 20 people living in a one-bedroom apartment. When you think of people who live in comparable circumstances, your concept of "privacy" has to be affected. What does privacy mean to someone who is homeless or someone who lives in any kind of extreme poverty?

Privacy, as commonly expressed in the more affluent parts of the United States, is a very fluid concept. As a long time trial attorney, I often encountered situations where claims of "privacy" were merely a coverup for fraud and other illegal activities. During the last few years, I have had extensive contact with individuals suffering from dementia. I can assure you that there is little private about the life of a person in the last stages of Alzheimer's disease.

Now to the subject of DNA and privacy? What is and what is not private about genealogical DNA testing? There are estimates that over 26 million people have taken a genealogical DNA test from one of the major online genealogical DNA testing companies. See "More than 26 million people have added their DNA to four leading ancestry databases: report." I am pretty sure that is a low estimate., for example, has a Privacy statement about those who take or are going to take an DNA test.  Here are a screenshot and a link to the Privacy page.
Here is a list of the kinds of data that Ancestry collects from its users.

  • Account Information
  • Credit Card/Payment Information
  • DNA Kit Activation Information
  • Profile Information
  • User Provided Content
  • Genetic Information
  • Social Media Information
  • Additional User Information
  • Note about health-related information
  • Your Communications
  • Contests and Promotions
  • Find A Grave Photos and Photo Volunteers
  • Computer and Mobile Device Information
  • Information from Cookies and similar technologies
  • Information shared through social media features
  • Information from your use of the Service
  • Information from Public and Historical Records
  • Information from Third Parties
What is left to know? Once your DNA test results are known, you are also quickly embedded into a particular family and even your health and economic standing can be very specifically identified. 

Another interesting fact is that you are dropping samples of your DNA across the world everywhere you go. For example, what about the gold mine of DNA samples from the gum left on the bottoms of tables and chairs? We used to have big projects to clean the gum off the chairs in our church building. If you are losing your hair or getting a haircut, you are leaving a lot of DNA around the places you visit. You can read about any number of criminal cases that have been solved based on DNA from a tissue thrown in a garbage can. 

Again, what are we talking about when we use the term "privacy" in conjunction with genealogical research? It is fundamental law of privacy that the dead do not have any. Once you die, there are only extremely limited claims about your life that can be claimed to be private. On a recent trip to Europe, I found that it was not uncommon in public restrooms that female workers were present cleaning the male restrooms while being used by the male patrons. I don't know how that would go over in the United States but it points out that privacy is a cultural issue. 

Clearly, what you or I believe to be our private affairs depends on the circumstances and cultural background. Of course, so far I haven't even mentioned social networking. I can go on Facebook right now and find death notices, babies born, details of extensive medical operations, travel details, birthdays, details of peoples daily activities, and an endless stream of other daily details. Remember HIPPA (Health Insurance Portability and Accountability Act)? My wife can't have access to my medical information without my permission but you can read more than you want to know on Facebook. 

Clearly, as a culture, we need to redefine what we think is private and what is not. Genealogical DNA testing is just one more issue in the overall trend. 

See these previous posts:

Part One:
Part Two:
Part Three:
Part Four:
Part Five:
Part Six:
Part Seven:
Part Eight:
Part Nine:
Part Ten:
Part Eleven:
Part Twelve:

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