There has been a lot of controversy surrounding DNA testing lately. Some people have been upset by the police using DNA data to solve cold cases. This data that had been uploaded by individuals interested in genetic genealogy for their own personal research. The site law enforcement has primarily been using is GEDmatch.
GEDmatch is an open data website where people can upload their DNA raw data to compare with other users. They accept uploads from several companies, so it’s a great way to compare DNA with people who have tested with companies other than the one(s) you’ve tested with. You choose a user name and can provide an email address if you want people to be able to contact you. There are many free tools on the free website. It’s a wonderful way to not only find family, but to figure out exactly how you are related as they have a chromosome browser – something that some of the other sites do not offer.
Several cold cases have been solved using the DNA uploaded by unsuspecting family members of criminals. When it was announced in April of 2018 that the police had solved the Golden State Killer case with data found on GEDmatch, people reacted. Many were afraid that they and their families could be subjects of a witch hunt if their DNA remotely matched DNA from a crime scene. GEDmatch listened to their user’s concerns and updated their terms of service to say that they would assist law enforcement by giving access to user’s DNA data only in extreme cases such as murder or violent rape.
This week, they violated their own terms of service by allowing law enforcement to access their user’s DNA data for a case that does not meet the criteria established in their terms of service. Parabon NanoLabs initially refused to assist the police, but relented after GEDmatch contacted them requesting them to grant permission. In Tuesday’s occurrence, the detective assigned to the case contacted GEDmatch directly and explained the details of the brutal beating of a 71 year old woman. The brutality of the crime was such that it resulted in GEDmatch relenting and allowing Parabon to provide DNA info to the police.
I think it’s great that so many criminals are being brought to justice and I have no problem with law enforcement being assisted by the gentlemen behind GEDmatch. I agreed to the new terms of service. I discussed the new terms of service with the individuals that I administer tests for. I gave them the option to have their DNA profiles removed from the site. I was okay with the police potentially having access to my DNA information to solve rapes and murders – and I willingly consented when I agreed to the new terms of service. Had they updated their terms of service and requested permission to use my DNA for murder, violent rape, and also savage beatings, perhaps I would have agreed. I am not okay with having a third party decide for me that using my DNA for any other circumstances other than what I agreed to is acceptable. I’ve never agreed with the idea that it’s better to beg forgiveness rather than ask permission.
A new friend who is an adoptee recently told me she has considered DNA testing, but is concerned about insurance companies accessing her data in order to deny or limit coverage. With each company I’ve tested with, the terms of service state that they will not share my information with insurance companies. They also state that they will not share my data with law enforcement unless presented with a subpoena or a warrant.
As of today, I have removed all DNA profiles that I had previously uploaded to GEDmatch. As useful as the site has been, I cannot continue to give someone access to my DNA only for them to do what they like with it despite what I have agreed to. I’ve been a big proponent of DNA testing since I first spit in a vial 7 years ago. I still maintain it is one of the best decisions I’ve ever made. As a result, I’ve gained a wonderful sister and my amazing nieces and nephew. Not to mention the great cousins I’ve collected along the way. I will continue to recommend testing for anyone looking for family or just curious about ethnicity. As always, choose the testing company wisely. Be sure to read the terms of service so you know how your DNA data will be used. Of course it’s possible they could violate their terms of service like Gedmatch did. If that happens, I’ll delete my data from those companies as well. For now, the benefits outweigh the risks.