DNA privacy | Genealogy Gems

DNA and Privacy: No Man is a Genetic Island

by Lisa Cooke | Jun 23, 2018 | 01 What's New, DNA

The recent identification of the Golden State Killer through a DNA database for genealogy is just one way your DNA may be used in unexpected ways. Lisa Louise Cooke shares 5 key principles to keep in mind when considering your online DNA presence.

Golden State killer case and others prompts important question

Recently, Paula in Canada emailed me about the Golden State Killer case, which I talked about in a special episode of the Genealogy Gems Podcast earlier this month. For those who haven’t heard, a serial criminal from decades ago, known popularly as the Golden State Killer, was recently identified in part after investigators submitted DNA evidence left at the scene to a genetic genealogy database. Paula asked how that case—and specifically the investigators’ use of a genealogy DNA database for a non-genealogy purpose—affects the genealogy community.

In the face of all the enthusiasm over DNA testing, the downsides of DNA testing for genealogy isn’t a popular topic. However, the lid is off of pandoras box when it comes to DNA and there’s no putting it back on. Following the success of the Golden State Killer case, DNA evidence from over 100 crime scenes has recently been uploaded to GEDmatch (a website that provides free DNA and genealogical analysis tools for amateur and professional researchers and genealogists.), under the guidance of a new company (Parabon NanoLabs) that helps criminal investigators use genetic genealogy methods to identify genetic samples. Since DNA is here to stay, let’s talk about the varieties of ways that genealogical DNA testing results are being used may affect the genealogy community and the future of genetic genealogy.

DNA privacy for genealogists

In Genealogy Gems podcast episode #217 and here in this companion article, I share my own personal opinions. I invite you to listen to that episode and do your own homework before making your own decisions. Here, I summarize 5 principles to consider when it comes to sharing your DNA online:

1. Your data = dollars.

If you’re a Genealogy Gems Premium eLearning member and you’ve watched the Premium video Take Control of Your Family Tree, then you know your DNA data is already being shared within and beyond the genetic genealogy world. AncestryDNA and 23andMe have both discovered a lucrative market for the DNA data that their customers have paid them to process: the pharmaceutical industry. Read the Wired.com article on one partnership Ancestry has with the Google-owned biotech company called Calico. I’m not saying that this is bad or good. But it is happening. In the end we are each responsible for doing our own homework and making an informed and conscious decision about whether and how to share our DNA.

2. Look in the mirror: How are YOU using DNA databases?

Thousands of genealogists are already using genetic genealogy databases for purposes beyond privately building their family trees. Often, they want to connect with relatives they don’t know or with whom they aren’t in touch, and DNA becomes the “cousin bait.” For example:

Adopted children and birth parents trying to find each other
Locating estranged family members
Orphans trying to find long lost siblings and relatives

Individuals and agencies other than genealogists also use DNA databases to identify unknown human remains, such as John or Jane Doe cases and prisoners of war. All of these uses of DNA may be well within the parameters of how a genealogist would expect to see their samples used. But all of these uses can lead to tremendous consequences in the lives of those whose DNA is involved, not all of those consequences intended or positive.

3. Hang on to your restaurant napkin!

On a daily basis, in public places, we discard items that have our DNA on them. Many folks are concerned that the police may not be the only ones interested in picking them up. That’s very possible. In fact, waiters and waitresses pick up some of the best DNA samples on a daily basis: anything with saliva on it.

Why would anyone want your DNA? Well, we’ve all seen cases of accident victims being under surveillance to determine if they really are injured. DNA could reveal health issues of those seeking large insurance policies. Of course, it takes a bit of doing because the genealogy testing companies want you to submit the sample on the swab of their kit. In the podcast episode, I shared with you from my personal experience that it’s possible to work around that requirement.

We’re in the early wild west days of DNA. Who in the future might be incentivised to obtain your DNA?

4. We’re not the only ones interested in our DNA.

Those who may potentially be interested in your DNA go beyond even genealogists, crime fighters, and those who identify bodies. The list includes insurance companies, employers, governments, educators, and many more. A news article at news.com.au states that “In Australia, life insurers are allowed to ask if an applicant is considering having genetic testing, and can then use the results to determine their coverage — a decision not everybody thinks is fair.” It goes on to say that “in China, by comparison, authorities have reportedly collected DNA samples from millions of residents for the purpose of surveillance.”

5. No one is a genetic island.

Be aware that when you test, you are also making a decision on behalf of your parents, siblings, children, grandchildren, and future descendants. Your DNA (and accompanying tree data) could be used to identify them in the future in ways that help or harm them. Regardless of good intentions or stated ethics codes in the genealogy community, it isn’t possible to write and get the express permission of everyone who could be affected by you having your DNA tested. The water isn’t always crystal clear when it comes to DNA testing.

Resources

If you’ve already made the decision and have tested your DNA for genealogy, or you plan to, here are resources to help you navigate the process with greater awareness and success:

Listen to the free Genealogy Gems Podcast. We frequently discuss DNA testing and matching methodology. As mentioned earlier, the most recent episode is all about DNA, the Golden State Killer case, and your privacy. Click here to listen to this episode.
Explore our complete line of DNA quick reference guides. These help you navigate the major testing websites and each type of test, along with more advanced techniques for improving the knowledge you get from testing.
Become a Genealogy Gems Premium eLearning Member. You’ll get access to more than 20 DNA video classes, and additional video classes to help you organize and secure your genealogy data online and offline, while having fun and genealogical success.

About the Author: Lisa Louise Cooke

Lisa is the Producer and Host of the Genealogy Gems Podcast, an online genealogy audio show and app. She is the author of the books The Genealogist’s Google Toolbox, Mobile Genealogy, How to Find Your Family History in Newspapers, and the Google Earth for Genealogy video series, an international keynote speaker, and producer of the Family Tree Magazine Podcast.

AncestryDNA Privacy Policy Update: Why This Change Is Good

by Lisa Cooke | Jul 19, 2017 | 01 What's New, Ancestry, DNA | 12 comments

An update to AncestryDNA’s privacy policy requires us to take to take one more step when managing someone else’s DNA test. Here’s why Your DNA Guide Diahan Southard thinks that’s a good thing.

Like many teenagers, my 14-year old sees every situation only from her own point of view. I call it myopic-itis. This is, of course, how most of us react to every new situation. The difference between those suffering from this condition and the rest of us is that fairly quickly, perhaps once the shock has subsided, we can see things from the point of view of others, and can therefore be more understanding about the whole situation.

AncestryDNA recently caused an attack of myopic-itis when they announced a change to their policy on how DNA tests are registered. Previously, you could register anyone’s test under your own account. Say you were gathering the test for an aged aunt or disinterested cousin. You handle everything from the order to the test registration to managing all correspondence. Your aunt or cousin merely needed to spit in the tube.

However, effective today, July 18, 2017, that has changed. Each person who takes an AncestryDNA test must have their very own account at AncestryDNA.

A natural reaction is to immediately reject this as a terrible idea that will certainly slow–if not halt–your efforts to gather the needed genetic information from your less-than-enthusiastic relatives. Your myopic-itis flares up and threatens to cause you to throw up your hands in frustration and just forget the whole thing.

But don’t! Really, all that is changed is that you have to take one more step when administering DNA tests for your friends or relatives: create AncestryDNA accounts for them. Then, they can assign you as the Manager of their DNA kits. Doing so allows their DNA results to show up in your Ancestry account, just as if you yourself had registered the test under your account. Viola! (Well, if your relative doesn’t have an email account, you may have to create one, so that would be one more step.)

Now, why would Ancestry decide to so inconvenience your life with another step or two? Well, to protect the rights of the cousin and the aunt that you are asking to take the test. It is that simple. Not that you would, but if the results are in your account, you can delete them, you can limit their access to them. In short, you have ultimate control. Causing each test to have its own account tries to put that control back in the hands of the test taker.

One of the criticisms of this announcement is that Ancestry is doing this just to make more people buy subscriptions to Ancestry. I don’t think this is their primary motivation. In fact, a blogger in the UK, Debbie Kennett, suggested that it may be partially in reaction to a new law in the UK that, starting next year, will require this personal access inr order for Ancestry to continue selling tests there.

But even if getting more subscribers was their primary motivation for the change, how is encouraging interest in genealogy a bad thing?! Think of it this way: let’s say you tell your cousins, “I got this. Don’t worry about anything. I will do it all.” Then they will let you, and they won’t take any ownership of the process or the results.

Instead, now you can say, “I have created a login for you at Ancestry so you can view your own results. I will also be able to see them in my account. I would love to go over them with you, if you are interested. But you can go in anytime and look around.” Then wouldn’t it be great if they really did that? Maybe they’d even get so interested that they’d decide to help you research?!

DNA is one of the biggest hooks we have to get our friends and family interested in family history. I think this change is just one more way that we can spread our love of family history with our family–not to mention protect their privacy and their rights.

In addition to Debbie Kennett’s post I mentioned above, make sure to read the official announcement by Ancestry, and these two blog posts about questions you may have: Reality Check–Changes at AncestryDNA and Managing Multiple Kits and the New AncestryDNA Change.

Ready to test some relatives? Click here for tips on talking about DNA at your next family gathering (like, this summer’s reunion?). Then sign up for the free weekly Genealogy Gems e-newsletter and/or follow us on Facebook to learn about the fantastic DNA sales we’ve been spotting lately.