When dealing with your personal information, privacy matters. However, there are misunderstandings around DNA data used for genealogical purposes. It is important to put it into a wider context. To paraphrase a highly-respected Irish genetic genealogist, if you are really concerned about your privacy (by taking a commercially available DNA test) then you should not test in the first place. Similarly, do not have a social media page.
Testing companies and DNA websites do keep DNA data secure. Reputation is important, not to mention legal responsibilities. There is hardly any online company in any sphere of business that does not experience hacking attempts or had issues with security, but to my knowledge no DNA data has ever been stolen. Misleading stories on the internet and in the Press can blow events out of proportion leading to mistrust and panic, which in turn leads to people unnecessarily deleting their data and closing accounts. Everyone should be aware of ‘fake news’ and ensure they get their information from reputable sources.
It is also unfair to point fingers at any one company or website as data security is an ongoing issue for all. It is the same at a personal level in daily life. As one example, users of social media have learned that by sharing too much information in real time, such as holiday snaps, when people know who you are and where you live, can lead to your home being burgled while you are away.
In a previous article I mentioned that technical understanding of what DNA data is, how it can be used for genealogy, as well as general trust issues, are the primary areas of why people may not share their DNA data. Here are some direct quotes from people who I have approached and declined to share but were kind enough to provide their reasons from their perspective.
– “My DNA info is not on any public sites because of the lack of privacy protections.”
– “I have uneasiness about handing over personal information via the internet, despite knowing that your intentions are most likely good” and “I must admit that DNA data is something I don’t understand as far as security and possible use by others. As a result, I am hesitant to share.”
– “It is mainly privacy and not knowing what could happen to the information. I understand you can see it on Ancestry however you are not able to manipulate it from there.”
– “I would like to share my results with you as your work sounds interesting and is related to me, my bloodlines and family. Problem is it requires posting in a forum where I have no confidence in promises of privacy” and “I assume you are spamming/phishing and looking to steal my data.”
Most people have store or loyalty cards or have online shopping accounts that involve providing a great deal of personal information. These often require names, telephone numbers, home addresses, date of birth, marital status and even bank account details. You may have completed questionnaires on your family, shopping habits and hobbies. You may willingly agree to Cookies on websites, which allow them to track your browsing history. You may be posting photographs and your life history on social media. In putting your DNA data into context, the large amount of information you normally share with others in normal life and may not think too much about, should be acknowledged.
For those who wish to maintain a more anonymous profile having done a DNA test, there are many strategies available. This includes setting up a dedicated suitably anonymous Gmail address that you can use to register with DNA websites and forums. Most DNA testing companies allow you to be listed under a pseudonym without completing any part of your personal profile. You do not have to provide a family tree (or you can keep it private on Ancestry). I can say from experience, trying to identify this type of listed match (apart from knowing who else they match) is tough. If they do not reply to a message, then you may never know who they are. However, all this does also work against them using their own DNA result to prove their own genetic ancestry.
Those taking a DNA test should always read the fine print, as often it will include permissions for the testing company to share your DNA (albeit anonymously) with “selected partners.” Although access by law enforcement can be limited both by Law and user Terms & Conditions, and of concern to some (except to those who have altruistic inclinations to help catch serious criminals, aid injustices or solving cold cases), DNA companies may be required to respond to a court subpoena. Most libraries and worldwide law enforcement agencies have subscriptions to all leading family history and DNA testing sites where family trees and matches can be used to help with criminal investigations.
Let us discuss your raw DNA data file. In your account or settings, you can find a tab that allows you to download your DNA file. It is your right to have this file and I recommend all testers access it and keep it safely for their own use or to pass on to future generations. Even if someone got access to your log-in and password on these test sites, the file can only be sent to your registered email address; not downloaded directly. The file contains a standard format text file in a compressed Zip format, which is the normal way of downloading/uploading DNA data.
The DNA sharing website GEDmatch that provides more advanced tools for genetic genealogy has had its detractors, despite it offering a valuable free service at the basic level. What is not often understood is that once data is uploaded to that site the data is ‘parsed’, i.e., broken into pieces of data that are stored separately. The uploaded data file is deleted and there is no mechanism for reconstructing that file and downloading it back. Your only ID on GEDmatch is your kit number, your email address, and your list of matches. You can call yourself Mickey Mouse if you like. You can delete your account which removes your data at any time. You can only access the relevant parts of other’s data using the appropriate tools. GEDmatch will be discussed in more detail in a future article.
I manage over 100 kits on GEDmatch for people related to my investigations who do not wish to open their own free account, and I treat them anonymously in terms of labelling. Only my research email is available for enquiries. These genetic cousins are not interested in the detail but are willing to aid research into shared family origins. It also provides another level of anonymity for those who require it, since I become a de facto additional filter for their identity if enquiries are received.
Many would be surprised to learn that a raw DNA file has no personal identifying information. It consists of some header/format information and then the string of DNA coding that has been read for that tester, which may not include your whole genome. If you do not say who the tester is, it becomes whoever you label it as. I encourage people to open their file to check this for themselves. If you manage several kits, it is important you label them so you know who it is. It would not be the first time I have received two files of parent and child and found they were labelled the wrong way around. Fortunately, these can be easy to spot as the child often does not inherit all the genealogical markers from the parent.
This information is also in a form that is only useful for genetic genealogy and cannot be used for medical purposes, for example, which looks for different things in a person’s DNA makeup (genes). My DNA in various forms has been on websites since 2007 without problems. Data security is more advanced now than it ever was. No issues have been encountered with any of the DNA files I manage.
When carefully managed between trusted collaborators, there are no reasons not to share your DNA information. If you have paid for your test, it makes sense to get as much out of it as you can, especially when a lot more is available for free. When seeking an analogy, if you have gone to the trouble of passing your driving test (your initial DNA test result), why would you not want to drive and explore the world around you (genetic genealogy)?
Your DNA result is just the start. You may enjoy learning a new hobby. If you are lucky to match a serious genetic genealogist your single contribution through sharing could provide explanations for matches to many others and illuminate a deeper ancestry of which you were unaware. You might also help those who have uncertain parentage connect to their genetic heritage. As mentioned in a previous article, there are thousands of Irish in this unfortunate position.
Did this article answer any concerns you had about sharing your DNA data? Let me know your thoughts.
Questions and issues that can be answered as part of future articles can be emailed to DNAmatchingprojects@gmail.com or follow the West Cork DNA projects on Facebook ‘My Irish Genealogy & DNA’.