Who should you trust with your DNA? Are there privacy concerns that we should pay attention to when it comes to genetic testing?

DNA Testing, Heritage, Health, and Heredity

Jessica Gottlieb Health 2 Comments

This morning I was reading The Forward and they had a little blurb about how Wirecutter recommended Ancestry.com’s DNA testing but not 23andMe. As the child of an immigrant with limited documentation of births, deaths, and backgrounds I had a unique interest in some of this. Firstly I’ve used 23andme for my own personal results, and secondly, I have used Ancestry to attempt to locate documents.

My experiences with 23andme and Ancestry.com might surprise you.

I was invited to Silicon Valley in 2009 along with some friends of mine to try 23andMe. It was still very much in start up mode and at the time I was neither curious about my DNA nor was I interested in leaving an eight and ten-year-old child home so that I could learn about a new company. So I declined the invitation. After hearing about it later I still wasn’t curious.

About a year after that I was diagnosed with Rheumatoid Arthritis and instantly I gained interest in my genetics but was also terrified to learn too much. What had I passed along to my children? Sometime in 2016 I bought a 23andMe kit and found out some of the most boring information ever doled out. I found out I was likely to have brown eyes. I found out I was more than 96% Jewish. I found out that I was likely to have RA. I was waiting for them to tell me the sky was blue.

More recently I decided to apply for German Citizenship under article 116 (2) of the German Basic Law. This required me to locate documents from Germany proving that my parent and Grandparents had been stripped of their citizenship. The documents required were hosted on JewishGen.com, owned by Ancestry.com. They charged me to have access to my family’s information; birth dates, death dates, incarceration dates, marriage licenses, notes from concentration camps, and the like. There is something so inherently distasteful about profiting from someone trying to document their family’s demise in concentration camps that I held my nose and paid the $100 fee.

After selling me access to my Grandfather’s vital records Ancestry.com wants to sell me DNA testing services. Does that sound like a good idea to anyone?

Here’s the thing. 23andMe may be imperfect but it was founded by tech pioneers whose goals were to serve science. Ancestry has its home in Utah where the founders were Mormon. The LDS Church has long been a great resource for genealogy. The Church has this to say on the matter:

Genealogy, the study of one’s ancestors or family history, is one of the most popular hobbies in the world. People of all faiths and nationalities enjoy discovering where they come from. For members of The Church of Jesus Christ of Latter-day Saints, however, learning about one’s family history is more than just a casual endeavor. Latter-day Saints believe families can be together after this life. Therefore, it is essential to strengthen relationships with all family members, both those who are alive and those who have died.

Now, I understand that Ancestry is no longer a Mormon holding but it is still based in Lehi, Utah where 93% of the population is LDS. This is not a criticism of Mormon beliefs or philosophies, but there needs to be an acknowledgment that when you entrust a company with your most personal data an understanding of why the company exists may help you decide if you trust their privacy policies.

I’m not sure that sending your DNA to a privately held company that sells birth certificates is a good idea.

I am, however, certain that DNA testing is a great idea. I was able to take my raw data from 23andMe and input into a website called Promethease. Promethease’s privacy policy is unlike anything I’ve ever seen before. Your reports are deleted from their servers after 45 days if you’ve created an account and if you choose not to create an account it’s deleted after 24 hours. Promethease encourages people to pay using Bitcoin and to use their service from behind Tor.

The information I got from taking my raw data from 23andMe and running it through Promethease was actually quite helpful. I found that I’m one of the people who doesn’t synthesize methotrexate well and since that is one of the first treatments for Rheumatoid Arthritis this would have been extremely useful to know in 2010 when methotrexate was leaving me bruised and destroying my stomach while doing nothing at all to alleviate the symptoms of RA. I also found out that my genotype is 3.5 times more likely to suffer liver damage from the use of NSAIDs as well as gastrointestinal bleeding.

If you have a chronic disease like RA detailed genetic testing might be a good idea.

The information I was able to share with my rheumatologist is vital to sustained good health. I’ve been in remission with hardly a flare for several years now, but when things flare up (and they will because diseases suck that way) we’ll know that NSAIDs are the last course of treatment, not the first.

Genetic testing isn’t for everyone. Surely there are results most of us don’t want to see. I personally didn’t look at the results for a few of the higher stakes tests: think Alzheimers and Parkinsons. It’s extremely personal.

I worry though when sites like Wirecutter, that are respected by the tech community

Comments 2

  1. You can even upload your raw data to Xcode Life. They offer topical, well-organized reports for Nutrition, Fitness, Health, Skin, Precision Medicine, Allergies (my personal favorite) and even ancestry and fertility. http://www.xcode.in

    1. That’s an interesting website James but I am highly skeptical as there doesn’t seem to be anything in the way of privacy safeguards. 23 and me is research based, and having knowledge of the founders and their mission I am not terribly concerned about data there. Promethease is over the top with privacy, not even storing data on the server for longer than 30 days.

      I think that in the absence of very stringent privacy policies these sites should be avoided. I assume you work with them, perhaps that’s a message you can pass along.

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