Petition to Implement Informed Consent at GEDmatch

The form to sign the petition is at the bottom of this post.

Now that GEDmatch is owned by the forensics company Verogen, there are concerns.  Can a for-profit corporation that boasts they are “solely dedicated to forensic science” be good for genealogy?  That is, can they serve two masters—genealogists and law enforcement—at the same time?

I believe they can.  After all, the autosomal genealogy industry was founded by a company serving two masters.  23andMe has always walked the line between consumers on one hand and biomedical research on the other, and they have never, to my knowledge, violated their Terms of Service or our trust.

The key to 23andMe’s ability to balance competing interests is informed consent.  Informed consent is a foundational ethical principle in medicine and scientific research that ensures that each participant is treated fairly. (You can read more about ethical guidelines for research involving human subjects here.)

Some key elements of informed consent are:

  • The purpose and duration of the project should be clearly stated.
  • Possible risks and benefits (within reason) should be described.
  • The participant must be capable of understanding the potential consequences and making a reasonable judgement.
  • The participant should be allowed to make a choice without pressure or undue influence.

Given the sensitivity of genetic data and the consternation over law enforcement co-opting genealogy databases, informed consent for law enforcement matching at GEDmatch and elsewhere is the most logical path forward. It would restore confidence in the databases, ensure law enforcement has a pool of willing participants, and mitigate the fallout should any negative consequence come to pass. Knock on wood.

To encourage GEDmatch to implement an informed consent policy, I have written an open letter to Brett Williams, the CEO of Verogen.  The full text is here. Scroll to the bottom of this post to sign if you agree.

 

Petition to Implement Informed Consent at GEDmatch

Dear Mr. Brett Williams,

Congratulations on Verogen’s acquisition of GEDmatch. I am pleased to read that Verogen plans to improve the security and functionality of the site.

I am especially relieved to read your stance on law enforcement access. The personal data in our genomes should only be shared with government agents, or their contractors, after obtaining the explicit informed consent of the test taker. It is encouraging to know Verogen intends to honor individual choices with regard to law enforcement matching and will attempt to support and protect those individual selections, even if that means challenging search warrants that include opted-out kits. These assurances are essential for rebuilding trust with the genealogy community—a trust that is necessary for Gedmatch to continue to grow.

A crucial element missing from GEDmatch’s original implementation of the opt system is informed consent. The benefits and risks of opting-in to law-enforcement matching were never explained to users. Instead, GEDmatch actively encouraged users to opt-in and had “opt-in” as the default selection for new kits. Because users typically will not change default settings, a kit that is opted in to law enforcement matching may not have given truly informed consent. Additionally, there is no reminder to GEDmatch users who manage multiple kits that each individual test taker should make their own decision about whether or not to consent. That consent should not be made by the GEDmatch user unless the user has legal authority to make such decisions for the test taker.

Informed consent is standard practice in medicine and in scientific research involving humans. The same ethical standard should be applied to GEDmatch to regain the trust of the genealogy community and to allow the genetic genealogy industry to recover from the past year and a half of turmoil. Informed consent requires that the participants understand how their data will be used, know the risks and rewards, are able to opt-out at any time, and are not pressured into making a particular choice by those with conflicts of interest.

Below are some pros and cons to law-enforcement matching that can serve as a basis for an informed consent document for GEDmatch users.

HOW WILL I BENEFIT FROM OPTING-IN TO LAW ENFORCEMENT MATCHING?

Investigative genetic genealogy aims to identify violent criminals and give closure to the families of victims.  You may benefit indirectly or directly by participating in law enforcement matching:

  • By making your DNA data available to non-profit initiatives like the DNA Doe Project, your data may help to give closure to the family of an unidentified deceased person (a John or Jane Doe).
  • Your DNA data and family tree may help law enforcement bring a violent criminal to justice, thus preventing further violent crime.
  • Your DNA data may be used to help free an innocent person who has been wrongly convicted.
  • A robust database may act as a deterrent to future criminals.
  • In some cases, researchers working with law enforcement may be willing to share their genealogy research with you once the investigation is complete.

WHAT ARE THE RISKS OF TAKING PART IN LAW ENFORCEMENT MATCHING?

There are some potential risks of participating in law enforcement matching, including:

  • You may learn that you are related to a violent criminal.
  • You may learn that a relative died violently.
  • Law enforcement, or their contractors, may discover private information about you or your relatives, such as misattributed parentage or previously unknown relatives.
  • Your DNA data may be used to arrest someone who could be sentenced to death.
  • Law enforcement, or their contractors, using your DNA data and family tree may misidentify an innocent person as a person of interest, putting them under surveillance and possibly through unexpected stress and legal expense.
  • You may be named in a warrant that becomes public, putting you at risk of public harassment or retaliation.
  • You may be questioned by law enforcement about a DNA match.

I hope that having input from the genealogical community will provide you and your privacy officer with the start of an informed consent document to ensure that GEDmatch users understand the choices they are making. Users who make informed choices will be less likely to bring negative attention to GEDmatch and Verogen should they experience any of the risks they were warned about. If we all work toward the same goal, GEDmatch will once again become a trusted site for the genealogical community as well as an asset for forensic investigations.

Regards,
(your signature)

(The pros and cons list is based, in part, on a May 2019 blog post by yours truly with input from Maurice Gleeson, the education ambassador for the International Society of Genetic Genealogy and organizer of the annual Genetic Genealogy Ireland conference.)

 

Sign the Petition

If you agree that informed consent is essential to managing our DNA, you can sign the petition here.  You can even add a personal message of your own.  A copy will be emailed to Verogen on your behalf.  Your full name, email address, and (optional) address will appear in the email to Verogen, but only your given name and last initial will show to other readers of this post.  The DNA Geek will be able to see your full petition entry; I will not use it for any other purpose.

Petition for Informed Consent at GEDmatch

Dear Mr. Brett Williams,

Congratulations on Verogen’s acquisition of GEDmatch. I am pleased to read that Verogen plans to improve the security and functionality of the site.

I am especially relieved to read your stance on law enforcement access. The personal data in our genomes should only be shared with government agents, or their contractors, after obtaining the explicit informed consent of the test taker. It is encouraging to know Verogen intends to honor individual choices with regard to law enforcement matching and will attempt to support and protect those individual selections, even if that means challenging search warrants that include opted-out kits. These assurances are essential for rebuilding trust with the genealogy community—a trust that is necessary for Gedmatch to continue to grow.

A crucial element missing from GEDmatch's original implementation of the opt system is informed consent. The benefits and risks of opting-in to law-enforcement matching were never explained to users. Instead, GEDmatch actively encouraged users to opt-in and had "opt-in" as the default selection for new kits. Because users typically will not change default settings, a kit that is opted in to law enforcement matching may not have given truly informed consent. Additionally, there is no reminder to GEDmatch users who manage multiple kits that each individual test taker should make their own decision about whether or not to consent. That consent should not be made by the GEDmatch user unless the user has legal authority to make such decisions for the test taker.

Informed consent is standard practice in medicine and in scientific research involving humans. The same ethical standard should be applied to GEDmatch to regain the trust of the genealogy community and to allow the genetic genealogy industry to recover from the past year and a half of turmoil. Informed consent requires that the participants understand how their data will be used, know the risks and rewards, are able to opt-out at any time, and are not pressured into making a particular choice by those with conflicts of interest.

Below are some pros and cons to law-enforcement matching that can serve as a basis for an informed consent document for GEDmatch users.

HOW WILL I BENEFIT FROM OPTING-IN TO LAW ENFORCEMENT MATCHING?

Investigative genetic genealogy aims to identify violent criminals and give closure to the families of victims. You may benefit indirectly or directly by participating in law enforcement matching:

• By making your DNA data available to non-profit initiatives like the DNA Doe Project, your data may help to give closure to the family of an unidentified deceased person (a John or Jane Doe).
• Your DNA data and family tree may help law enforcement bring a violent criminal to justice, thus preventing further violent crime.
• Your DNA data may be used to help free an innocent person who has been wrongly convicted.
• A robust database may act as a deterrent to future criminals.
• In some cases, researchers working with law enforcement may be willing to share their genealogy research with you once the investigation is complete.

WHAT ARE THE RISKS OF TAKING PART IN LAW ENFORCEMENT MATCHING?

There are some potential risks of participating in law enforcement matching, including:

• You may learn that you are related to a violent criminal.
• You may learn that a relative died violently.
• Law enforcement, or their contractors, may discover private information about you or your relatives, such as misattributed parentage or previously unknown relatives.
• Your DNA data may be used to arrest someone who could be sentenced to death.
• Law enforcement, or their contractors, using your DNA data and family tree may misidentify an innocent person as a person of interest, putting them under surveillance and possibly through unexpected stress and legal expense.
• You may be named in a warrant that becomes public, putting you at risk of public harassment or retaliation.
• You may be questioned by law enforcement about a DNA match.

I hope that having input from the genealogical community will provide you and your privacy officer with the start of an informed consent document to ensure that GEDmatch users understand the choices they are making. Users who make informed choices will be less likely to bring negative attention to GEDmatch and Verogen should they experience any of the risks they were warned about. If we all work toward the same goal, GEDmatch will once again become a trusted site for the genealogical community as well as an asset for forensic investigations.

Regards,

**your signature**

65 signatures

Share this with your friends:

   

Latest Signatures
65 Mr James E. Jan 22, 2020
64 Ms Linda S. Jan 21, 2020
63 Mrs Jennifer A. Jan 19, 2020
62 Ms Shirley F. Jan 18, 2020
61 Ms Audrey W. Jan 18, 2020
60 Ms Georgianne K. Jan 16, 2020
59 Ms Kris H. Jan 15, 2020
58 Ms L R. Jan 15, 2020
57 Ms Mica A. Jan 14, 2020
56 Ms Sandra M. Jan 14, 2020
55 Mr David N. Jan 13, 2020
54 Ms Kelly W. Jan 13, 2020
53 Ms April E. Jan 13, 2020
52 Mr Timothy H. Jan 12, 2020
51 Ms Jennifer T. Jan 12, 2020
50 Mr Erik S. Jan 12, 2020
49 Ms Jennifer d. Jan 12, 2020
48 Ms Anna S. Jan 12, 2020
47 Mr Darrell T. Jan 12, 2020
46 Mrs Jessica A. Jan 12, 2020
45 Ms Arlene F. Jan 12, 2020
44 Mr Fredrik G. Jan 12, 2020
43 Ms Bella D. Jan 11, 2020
42 Ms Alana H. Jan 11, 2020
41 Ms L W. Jan 11, 2020
40 Mr Alan . Jan 11, 2020
39 Dr. Erin H. Jan 11, 2020
38 Mr Thomas G. Jan 11, 2020
37 Mr Gary H. Jan 11, 2020
36 Mr Christopher S. Jan 11, 2020
35 Ms Kelly M. Jan 11, 2020
34 Ms Melanie R. Jan 11, 2020
33 Mr Roger W. Jan 11, 2020
32 Ms Connie D. Jan 11, 2020
31 Ms Diann L. Jan 11, 2020
30 Ms Diane K. Jan 11, 2020
29 Ms Gaye T. Jan 11, 2020
28 Mr Michael B. Jan 11, 2020
27 Mr Bruno K. Jan 11, 2020
26 Mrs Judith B. Jan 11, 2020
25 Mr Ronald E. Jan 11, 2020
24 Ms Maureen S. Jan 10, 2020
23 Mr Andreas W. Jan 10, 2020
22 Mr Robert P. Jan 10, 2020
21 Mrs Roberta F. Jan 10, 2020
20 Mr Bradley J. Jan 10, 2020
19 Mr Robert S. Jan 10, 2020
18 Ms Michelle W. Jan 10, 2020
17 Ms Deborah W. Jan 10, 2020
16 Mrs Karla B. Jan 10, 2020

 

Updates to This Post

11 January 2020 — minor edits to address a technical difficulty and to help people find the petition form

 

16 thoughts on “Petition to Implement Informed Consent at GEDmatch”

  1. While people have their knickers in knots over GEDmatch, no genetic genealogist has commented on the US pilot project to collect DNA from people detained at the Canadian and Mexican borders.

    The US plans to collect DNA from US and non-US citizens in immigration custody and submit it to the FBI, with plans to expand nationwide.

    The information would go into a massive criminal database run by the FBI, where it would be held indefinitely.

    https://www.ctvnews.ca/world/u-s-to-start-collecting-dna-from-people-detained-at-border-1.4755259

    1. I strenuously object to collecting and banking DNA data from detainees, and have said so in forums that allow discussion of such topics. However, it’s important to note that the FBI database is not a genetic genealogy database. They use 20 STR markers (the so-called CODIS markers), whereas we use about 700,000 SNP markers. CODIS markers are primarily for re-identification of the tester, not for matching to distant cousins. At best, they can match out to half siblings.

  2. Signed – Couldn’t agree more about the informed consent!

    But oh my goodness it hadn’t even occurred to me about people being subjected to the death penalty. Thanks for bringing that to my attention. I will be opting out as long as US has this barbaric practice!

  3. I clicked to see all comments and what shows up are only comments from Jan 10,2020! And these comments are only supportive of informed consent. It would appear to me, that there are other opinions out there that are not showing up in just 6 comments. A click point on a web page that states “all comments” should get me to “all comments”. If there are only 6 that is not much of a testimony of the thoughts on DNA sharing. And, it is my understanding the the Feds, in Sept 2010 came up with what they view as a workable plan that appears to me to fit. And, I am for catching criminals but only criminals. Modern science, is a tool that is helping make a difference. People who have committed crimes and gotten away with them are being sorted out. I do agree there needs to be a balance, but, If a criminal that killed your daughter has gotten away with murder and DNA solves the case, I am for it.

  4. While I agree that informed consent is needed, the GEDmatch default has been Opt-Out since May 2019. All kits were reset to opt-out at that time and users must go in and change the selection to allow access.

    1. For new uploads, the “Opt-in” button is pre-selected. This is what the descriptive text for the opt-in choice says: “This kit will be shown in match results for all other kits in the database. The operators of GEDmatch encourage everybody to select this option unless they have specific reasons not to.” There’s no mention of law-enforcement, and GEDmatch is actively encouraging users to pick that option despite having a financial conflict of interest.

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.