Facing DNA Privacy Concerns Head-On With Informed Consent

This weekend, GEDmatch changed its Terms of Service to automatically opt every one of the >1,250,000 kits in the database out of matching with any kit uploaded for law enforcement purposes. This was to allay concerns by some that law enforcement was using DNA kits in the GEDmatch database, whether for crimes originally enumerated in the Terms of Service (homicide and sexual assault) and/or possibly for lesser crimes.

There is a ton of media coverage for these events:

And blog posts:

People in the database that want their DNA to be utilized by law enforcement must now specifically opt-in their kit in order for their DNA to be matched with a kit uploaded by law enforcement.

Following the automatic opt-out and the change to the ToS, law enforcement can now upload DNA to “identify a perpetrator of a violent crime against another individual, where ‘violent crime’ is defined as murder, nonnegligent manslaughter, aggravated rape, robbery, or aggravated assault.” However, kits that are opted-out will not be seen as a match to the uploaded law enforcement kit. Kits that are opted-in can be seen as a match to the uploaded law enforcement kit.

HOWEVER: note that while kits that are opted-out of matching with any kit uploaded for law enforcement purposes cannot be matched to that kit, it is IMPOSSIBLE to completely opt-out of law enforcement use of a kit unless you delete the kit or change it to a “research” kit. For example, if law enforcement uploads Kit #1 to the GEDmatch database, they can see the match to Kit #2 if Kit #2 has opted-in to law enforcement use. Law enforcement cannot, using Kit #1, see the family members of Kit #2 since they are opted-out. However, law enforcement CAN use Kit #2 to search for and find the family members of Kit #2. This is not a violation of the Terms of Service, even though the family members of Kit #2 have opted-out. Thus, there is no way to opt completely out of law enforcement use of DNA at GEDmatch unless the kit is deleted or made a ‘research’ kit.

Accordingly, to ensure fully informed consent, it is vital that you and anyone you’ve added to the GEDmatch database understand the privacy options:

  • If the test-taker supports law enforcement use of the DNA, opt-in to law enforcement matching;
  • If the test-taker wants a minimal layer of protection/privacy, opt-out of law enforcement matching (recognizing that it can still be used for law enforcement as described above); OR
  • If the test-taker does not support law enforcement use of the DNA, delete the kit or make it ‘research’ (as research kits cannot be seen by other people).

Unfortunately, this also means that despite automatic opt-out, not everyone in the GEDmatch database will have given informed consent because their DNA can still be used by law enforcement. That remains a continuing problem that will have to be resolved at some point.

The Guiding Principle: Informed Consent

The guiding principle here is informed consent. Although there are arguments that the end justifies the means, or that it is our moral obligation to upload our DNA to GEDmatch, these arguments are not supported by the historical or legal framework of the United States (where all of this is currently taking place). We have a system in place that has spent the past 200+ years in thousands of legal proceedings upholding the principal that the end does not justify the means if it exceeds the power of the government or erodes the privacy of the individual.

Wanting a database built completely on informed consent does not make a person “anti-law enforcement” or “pro-criminal” or, right to the absurd, “wanting to hide something or someone.” Accusations like that indicate a lack of understanding that everyone deserves to make their own decision regarding their own DNA. We all want criminals off the streets, even people that are highly private want criminals off the street, but we all want to make sure they get off the street in an ethical way (and that they stay off the street!). We don’t yet have any idea what the outcome of using genealogy DNA test results without informed consent or permission could do to these cases, or how it might erode trust.

Does requiring informed consent diminish the size and impact of a database? Yes, it does, but that’s the entire point of informed consent. Informed consent exists to make sure that only the people that want to be there, and that understand the possible implications of being there, are actually there. This results in a DNA database useful for law enforcement purposes that could one day in the not-so-distant future be more robust and powerful – and more trustworthy – than any currently in existence.

When we published the Genetic Genealogy Standards in 2015, we did so knowing full well that they would prevent people from testing their DNA. But that was a necessary outcome to make sure that DNA was being tested in the most responsible and ethical way. Not only were the Standards created in conjunction with several people helping law enforcement catch criminals, the Standards have been cited over and over again within the community.

Ensuring Rational, Informed, and Educational Discussion

To ensure that people are truly making a decision based on informed consent, we must also be careful how we discuss it with them. Emotional appeals such as asserting that opting-out will let criminals run amok or that our very lives are in danger, are themselves dangerous if people opt-in out of fear rather than true informed consent. A database built on a base of informed consent is much, much stronger than a database build on a base of fear.

We must also consider scale. Although law enforcement may not be able to solve the same 50 cases/year over the next year or two, it’s quite likely that 10 or 100 times that number of criminals are let go every year due to clerical errors alone. This is not a national emergency, it is a bump in the road, a temporary minor setback (particularly in view of the reality of the limited opt-out situation) that helps build trust in DNA testing and should ultimately lead to MORE people joining these databases in support of law enforcement.

We already know that law enforcement use of DNA is having an impact on DNA testing. Those that speak at seminars and conferences are seeing more people than ever before ask about privacy concerns, and there are worries that it is having a serious negative effect on DNA testing (as noted by 23andMe CEO Anne Wojcicki earlier this year). If we can educate people and assure them that their DNA will be kept private to whichever level they might be comfortable with, we build trust in DNA testing and continue to grow the databases that have become so valuable to our genealogical research.

It is YOUR Decision ONLY!

It is just as important that everyone realize there is nothing wrong with a person wanting their DNA to be opted-in and available for use by law enforcement! Despite inflammatory accusations to the contrary, it IS perfectly acceptable to remain in the GEDmatch database so long as there is informed consent. That is simply their right to make their own decision regarding their own DNA. No one should be trampling anyone else’s right to make an informed decision about their own DNA.

Only YOU have the right to decide YOUR personal privacy comfort level. No company, database, or individual has the right to make that decision for you. Don’t let anyone bully you into a decision about your own DNA, there is no right or wrong. Instead, get informed and make a decision you can be comfortable with.

Unfortunately, as noted several years ago now there are DNA bullies out there, people that don’t care about your personal choice, that only care if you upload everything, or only care that you never upload anything. Informed consent ensures that YOU get to make the best decision for YOU. That’s it, plain and simple.

This graphic barely scratches the surface of all the issues involved, but can be a starting point for permission:

 

20 Responses

  1. Suzanne C Matson 22 May 2019 / 10:44 am

    One of my major concerns is the lack of privacy or anonymity provided to those whose DNA was used to identify a suspect and without the express consent of that person. There has been at least one known case where the defendant’s family contacted the individual whose DNA was used to identify their family member as a suspect. What protection is available for these individuals whose DNA was used? How did the defendant’s family gain access to that information? Was it released to the defense attorney who shared with his client’s family? Does law enforcement have no concern for those they place in danger by their actions and attempts to solve a case at all costs?

    • D. R. Hunter 22 May 2019 / 3:19 pm

      Suzanne, even if the DNA companies do not release the information on who “fingered” a suspect, there is nothing to stop a suspect from submitting DNA samples to all of the major firms in this field, under a fake name, and seeing who’s at or near the top of the list of matches. Then, the rest of the “gang” takes revenge.

      Also, now that the police have shown how easy it is to do, we may someday see a case where a stalker took DNA from the drinking glass of the woman he tried unsuccessfully to pick up, in order to harass her or her family.

      • Suzanne C Matson 23 May 2019 / 9:39 am

        I agree that those are possibilities, but that doesn’t excuse law enforcement or prosecutors for exposing the unwitting DNA donors to danger. At the very least there should be clear procedures on how they are to proceed in this area in order to protect the innocent.

  2. Margaret Press 22 May 2019 / 3:58 pm

    GEDmatch is such a wonderful and important resource, given to us absolutely free. John and Curtis provided us a place where we all could come, share, learn and discover. No rules about what we used it for. Why should there be? No promises or expectations of privacy. How could there be?

    In those days, we recognized that privacy was our responsibility, not Gedmatch’s.

    GEDMatch’s original Terms of Service (ToS) read:

    It has always been GEDmatch’s policy to inform users that the database could be used for other uses, as set forth in the Site Policy…. If you are concerned about non-genealogical uses of your DNA, you should not upload your DNA to the database and/or you should remove DNA that has already been uploaded.

    GEDmatch site policy:
    In today’s world, there are real dangers of identity theft, credit fraud, etc. We try to strike a balance between these conflicting realities and the need to share information with other users. In the end, if you require absolute privacy and security, we must ask that you do not upload your data to GEDmatch. If you already have it here, please delete it.

    This DID allow a user to exercise Informed Consent in making his decision. Back then, it was simple. You opted out by not uploading.

    After the GSK was identified using the site in April 2018, GEDmatch was persuaded to try to rein in the use of the database by crafting a new ToS that limited Law Enforcement use of the site.

    When it was revealed last week that other uses had occurred, GEDMatch was again persuaded to change the ToS to accept data from a wider range of violent crimes, and also to set up an opt-in/opt-out system meant to safeguard user privacy – a system people are now realizing can never be perfect. Subsequent dissatisfaction has caused some genealogists to call for additional changes that could not only exhaust GEDMatch financially, but that could make the system impractically complex and unusable. As we all should understand by now, this would only provide an illusion of privacy, given that ToS in general will always evolve, rely on the honor system and are unenforceable.

    GEDmatch has done their best to protect us, when it is unreasonable to expect that they can. They will never be able to give us the security that our data is not exposed to parties we do not want it to be exposed to.

    GEDmatch is free. GEDmatch is run by two guys who have done us a great service in providing us with great tools, space, and service. They don’t sell our data as Ancestry and 23andMe do.

    In recent months, they have added to that the responsibility of protecting our privacy by responding to what has evolved into expensive and impractical demands even though it is not GEDmatch’s responsibility to do so. If you are a user on GEDMatch, and you are worried about who may have access to your data, then delete it. If you are considering using GEDMatch but you want to be safe, then don’t upload. The choice is yours.

    And once you put data in a public place the courts have found through the third party doctrine that you lose the presumption of privacy afforded by the 4th amendment.

    Please do not destroy this fabulous resource with ever-increasing demands for privacy that can never be satisfied. Curt and John’s brainchild is a gift to us. Let’s keep it that way. Let’s take responsibility for privacy seriously, but before uploading data to GEDMatch, not after. There is no such thing as privacy online today. The sooner we accept that, the safer we’ll be.

    • Anne Myers 23 May 2019 / 11:35 am

      When I began using GEDmatch and other services, it was to learn more about my family. I was naive to not think that of course law enforcement would want to jump into this wonderful resources of hundreds of thousands of pots of DNA just waiting to be matched up. So I was really shocked to learn that it was doing exactly that. People going into it today have the option to make that available from day one. Those of us already in the database had no choice and made no informed consent for that use.

      It’s clear that informed consent and privacy isn’t particularly important to those who are in the business of helping law enforcement solve crimes and find missing relatives. And I understand that removing my data from the company (ies) may make something more difficult for them. But my right to privacy matters to me and my family, and I fail to understand how accepting that there is no such thing as privacy will keep me safer.

    • Lynn Nickell 23 May 2019 / 12:53 pm

      Thank you Margaret for your excellent comments. It baffles me why people are so concerned about law enforcement using DNA. Are these people who have something to hide? If you had a relative who committed crimes, wouldn’t you want to know? If someone is so concerned about privacy, don’t post on GEDMatch or don’t post DNA results anywhere.

      DNA in the Genealogy world brings a wealth of information. In the real world, it can identify criminals. Let’s use it for both purposes.

  3. Cathy 22 May 2019 / 8:24 pm

    Thank you, Blaine, for the lucid and informative post! (And for all you do for the genetic genealogy community)

  4. Melanie J Rice 23 May 2019 / 8:49 am

    Thanks for adding clarity to the issues at stake in this swirling discussion.

    I hope that ultimate good will come of the turmoil the LE issue has created, and that the fractures in our community will be healed.

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