Is your sample and DNA information secure?

Several of our cousins on the Yahoo site have expressed very valid concerns over the privacy of DNA data and the cheek scraping sample that will be sent to Family Tree DNA. Here's we'll discuss this as thoroughly as possible. If after reading this you still have concerns, contact us and we'll try to get even more information to you.

The most up to date information on this quickly evolving topic is on the web. We have yet to find a book that helps much. So please go through the links below if you¼re at all considering testing your DNA for Genealogy. We've put in links that are pro and con so you can make up your own minds.

1. Your sample scraping from the inside of your mouth will be kept separate from your identifying information by about 100 miles. When Family Tree DNA receives your information, even before they send your kit, they assign you a code. Usually 5-6 digits. When the kit with your scrapings in it comes back, they separate out any mention of your name or identity. Your scrapings then go to a lab at The University of Arizona with only your code number and your Surname. This lab carries out the testing. Your actual scrapings stay at the University of Arizona identified only by your code. Your unique DNA markers go back to FTDNA who matches your results with your personal information and, if you've allowed it, publishes your set of markers on their website for comparison to others who¼ve tested. ONLY IF YOU'VE ALLOWED IT. Now, even some of the administrators of this site are somewhat concerned about keeping their sample private and keeping it away from their personal identity information 100 miles away at Family Tree DNA. For this reason, they'll soon have their sample destroyed, a service FTDNA is happy to do. Their 37 markers will stay on the database because, this information is thin enough that it can't identify them by itself.

2. The actual results that you see are not "deep" enough to describe you to anyone. Even the 37-Marker test does not give anyone enough information to identify you completely. These markers exist in the so-called "non-coding" regions of the Y-chromosome. (The DNA evaluated in this test is often called "junk DNA" because of its lack of medical information.) The Y-chromosome contains very little genetic data, and those regions of the Y-chromosome that contain more data are not of interest to genealogists. You are not uniquely identified by this DNA testing. Your result cannot be correlated to DNA samples used in police work. This type of work requires many more markers.

So, let's say you get tested and your sample is at the University of Arizona. If someone wanted to use it against you somehow, they'd need to break into Family Tree DNA and find your name and kit number among the 50,000 tested so far. They'd then need to take that number 100 miles north to the University of Arizona and break into the locked refrigeration unit and find your cheek scraping. They'll need to pay a lot of money at a research facility to have hundreds more markers tested. It is not enough simply to have knowledge of 100 out of the 5 million DNA markers which vary between people. Those markers must be scattered across enough different chromosomes to provide coverage of nearly all of the chromosomes to give a wide enough sample. It's very expensive testing. Our research project (and all DNA for Genealogy projects we know of) are sequencing only a small part of the YDNA, are doing so on a limited number of chromosomes, and are not providing the kind of data needed to enable unique identification.

Now, there's always the chance that this information will be mishandled by the testing facility and your number and information given out. It's happened with credit card companies. But unless someone gets your actual cheek scraping, they will have a string of 37 numbers that are completely useless in identifying you.

One option is simply to have it destroyed or to test anonymously and keep your specific results private. We can explain how to do this. It's really quite simple. Anonymous testing means you designate a friend to order the kit for you. You take the test and send it in. You tell FTDNA not to publish any of your Marker Sequences and no one can see them. The downside is that you don't see the incredibly significant matching they do on their database. Stan and Steve have found some very interesting matches (and non-matches) with the Barton family and the McQuiston family of Caithness which, when compared to our paper research, was fascinating.

If you're still considering the test and have any more questions, don't hesitate to ask Stan Iain or Steve.

Sources and further reading --

Terry Barton's FAQ section is a wonderful resource and I've pulled many of the paragraphs you'll see below directly from there. I should mention, our St. Clair//Sinclair research projects are working in conjunction with his via Family Tree DNA.

An informative MSNBC article.

A critical and interesting article from Ancestry.com

In 2002, the Canadian Biotechnology Advisory Committee commissioned a series of academic papers on issues associated with population genetic biobanks. They considered all sides of the issue.

And now for the other opinions. Hey, I said I'd try to be unbiased.

An interesting site from 1996. Not quite sure where his opinion ends up.

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