LESSON 12: Privacy, Paranoia & Persistence
Genealogy is a practice in patience. Anyone who has been at this for a long time remembers the days of SASE (self-addressed stamped envelopes), the Genealogical Helper (now defunct periodical), microfiche and microfilm readers. Rather than wait weeks to send out a query and wait for the snail-mail reply we can now ask questions and get answers almost instantly on the internet. And yet for all the strides we have made in digitized records, indexes etc., much of genealogy is still painstakingly slow and methodical. In the beginning DNA testing offered the hope that all of our genealogical brick walls would come crashing down and we would make progress in filling in our trees in leaps and bounds. The truth is we sometimes do, but by and large it is still an arduous process.
DNA testing brings with it a whole host of concerns in this age of dwindling privacy where you can “google” anyone and find out more about them than they would care to share. You can drive by a stranger’s house, find out their arrest record and look at a family picture with a few clicks of a mouse. With the airwaves showing DNA being used to solve crimes what are your relatives to think when you want them to participate in your “hobby”? Will they be responsible for someone’s arrest? Perhaps unearth a few skeletons hiding in the closet. Some of the concerns are real and some border on paranoia. No matter—DNA testing is a very personal decision. No one should be pressured into taking a DNA test. Most of us who have tested quickly find that our concerns were really over blown.
The fact is if someone really wants our DNA, whether friend or foe, they can easily get what they want from a discarded cup. Y-DNA projects have identified the Y-DNA signature of thousands of surnames. But the choice to test resides with the person whose DNA is being tested. What is often needed is a bit of education so that the individual can make an informed decision. Perhaps the greatest concerns are addressed by the federal Genetic Information Nondiscrimination Act which protects Americans from being treated unfairly because of differences in their DNA that may affect their health. The law prevents discrimination from health insurers and employers.
The areas not covered are: life insurance, disability insurance and long-term care insurance. This is the reason that companies like FTDNA and ANCESTRY originally attempted to scrub all medically relevant SNPs from their results. If this is a major concern then you may want to avoid testing at 23andMe. However for most people the benefit of the medically relevant information far outweighs the potential risks. Francis B. Collins, Director of the National Institutes of Health, declares in his book “The Language of Life: DNA and the Revolution in Personalized Medicine” that the time of personalized genomics is already here and in the coming years your doctor will consult your DNA before prescribing medicines, ordering tests etc.
Some states have enacted tougher legislation to further protect consumers from possible discrimination, but there remains a legitimate area of concern until further anti-discrimination laws are passed. I would venture to guess that your privacy is at greater risk from social media than from a DNA test. If someone wants to steal your identity there are far easier ways to do so. I suggest that if you are truly worried that you simply use your initials or a pseudonyn as your ID. Please see article below by Virgina Hughes for some of the complexities of sharing information. If you are reading this after working through the lessons you will know that when you get an atDNA match all that they would know is one half of the values for the SNPs where you have a shared DNA segment. That’s hardly enough to use in any sinister way and unlikely to be identifying in a meaningful way other than for genealogical purposes. Encouraging friends and family members to test requires patience, education and persistence. Having five major DNA testing companies is actually a great advantage as they have different privacy policies and appeal to different interests. Those who care nothing about their great-great grandmother, may care about their risk for Alzheimer’s disease. Or they may be scared to find out if they are at greater risk of developing Parkinson’s, but they may be interested in whether great-grandma was an “Indian Princess.” The informed genetic genealogist uses all the tools in the genetic genealogist’s toolbox.
Since writing the initial Beginner’s Guide there have been substantial changes in the use of DNA for solving crimes and identifying remains. GEDMATCH has been purchased by a Forensics company and has had a major security breech. Some are comfortable with the risks their and some are not, GEDMATCH has an opt in if you want to share your kits so they can be used for Law Enforcement purposes. Again these are personal decisions. I have removed my kits from GEDMATCH in an abundance of caution, but you may be comfortable with keeping them there.
In the end genealogy is a collaborative effort which depends greatly on our willingness to share; whether the sharing be DNA, photos, research, or our time in helping others. Through our shared DNA we learn that we are connected in ways we may never imagine. The boundaries that separate us from others begin to blur and we make connections across the globe. We are all ambassadors for the genetic genealogy community: let us conduct ourselves ethically and in the hope of promoting the greater good. Pay it forward. These lessons are my effort to give back. So many of the genealogists and family that helped me are long since departed. They could not have imagined that DNA would be used to prove long held legends and to solve family mysteries. Special thanks to my beta testers including Marilyn Diggs; my volunteer editor Ed Cannon; “Your Genetic Genealogist,” CeCe Moore; programmer and cousin Kitty Munson Cooper, Angie Bush and the DNA Newbie community who prodded me into writing these lessons. And additionally to the larger genetic genealogy community who have educated me and whose lessons and blogs I link to. I cannot help but mention Debbie Kennett, Blaine Bettinger, Roberta Estes, Judy G. Russell, Ann Cousins, Tim Jantzen and many, many others.
DNA and Paranoia by Judy G. Russell
No DNA Bullying by Roberta Estes
23 and You: Does that commercial DNA test you just bought violate somebody else’s privacy by Virgina Hughes in Matter
Our DNA Can’t be Patented by Judy G. Russell