Thoughts on DNA, Privacy, and Big Corporations

By this time, my few readers should know that I mostly hate AncestryDNA, that 23andMe annoys me, and that I have only minor complaints about Family Tree DNA.

I love genetic genealogy. I encourage DNA testing for genealogy with a passion. I think we all need to be educated about the risks, and to learn the code of ethics, better known as the Genetic Genealogy Standards, which are available for download at http://www.geneticgenealogystandards.com/.

I do have a bit of a conundrum, though. (Don’t you love that word? Conundrum. Conundrum. I think I’ll use it for the name of a pet someday. “Here, Conundrum! Kitty, kitty, kitty!”)

I am a cynical realist. So as you read, keep that in mind

My Conundrum

Problem #1: I would like to think that my DNA is private, that I can control it, and that it even matters if I do. But it’s not private. I mean, legally it is, but in reality, it isn’t.

In 2007, when DNA testing was young and after my mother and one of her two brothers had passed away, I learned about genetic genealogy and asked my other uncle if he would be willing to DNA test for genealogical research. His answer was a surprising “no” because “you never know what they’ll do with that and where it will end up, including the government.” Seven years later, he passed away. I never got up the courage to ask him again. I had many opportunities. What would he have done, stopped talking to me? That’s not the kind of person he was.

Problem #2: I really do not like greed and corporations and uncontrolled capitalism.

I don’t want to give you [DNA corporation] something that belongs to me in order for you to make money off of it, especially since I won’t make any money from you, even though I signed papers saying I would let you make all the money you can off of my little bit of saliva. But you [DNA corporation] are bigger than me, and you will do what you will anyway.

Conundrum Reconciliation

I honestly couldn’t care less who does what with my little bit of saliva, or when, or how. I’ll be dead within the next several decades anyway, and there are so many other things I am living for, looking forward to, and working toward – peace, justice, and ethical overhaul. Animal rescue and safety. The lives I can touch from day to day (most of them small or tiny and covered in fur).

Even though I am not a fan (understatement) of the control of corporasneezetions (think Ancestry in particular), I love genealogy and fellow genealogists. Anything ethical that will help with genealogy is okay by me, because I have no control over who does what with my saliva. All I have to do is sneeze and you can catch my DNA for yourself if you want to. I’ll hand it to you in a tissue.

If it weren’t for the USA and the corporate economy, without somebody making big money off of my little bit of saliva, then I wouldn’t get to do any genetic genealogy, which has already broken down, or helped to break down, three and a half brick walls for me. Maybe nobody will ever care about my family’s genealogy but me, but it is my passion. A break down of three and a half brick walls so far (in less than 4 years of using genetic genealogy) is amazing.

I/We hate to feel (and be) at the mercy of companies that take what we give them but don’t give us what we want. And sure, I’ll keep bitching about them – it’s what I do.

The whole health care sell-off our DNA to BigPharma thing stinks, and I do not like it at all – because I do not like BigPharma. But somehow, somewhere, I probably signed something that made AncestryDNA think they might be able to get me to let them use my DNA in that way. And I don’t want to kid myself into thinking that they wouldn’t do it anyway, even if I didn’t give consent. Because, really, how will I ever, ever know? If they did that and were caught, hefty fines – yes, yes. Closing down? No, because who of us wants to lose Ancestry?

Which brings me back to my uncle who died in 2014, and the things he was most likely worried about. He was a forward thinker and probably saw all of this coming. He had every right to keep his DNA to himself, and I would have had no right to take it without his consent; and, of course, I didn’t.

My conundrum is reconciled because, as I said, my DNA is technically not private, corporations will corporate, and I want genetic genealogy to progress. I want genealogy to progress. I opt out of the research choices, and I keep my focus on my list of DNA matches and how we match each other. And I use it. I use genetic genealogy slowly, but liberally.

At this time, I’m working on closing the deal on brick wall numbers 4 and 5. Sometimes, the one missing piece is on paper and sometimes it’s in the saliva. It’s kind of frustrating when it’s in both, which is where I am now.

But I’m loving it.

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