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.
(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.
Updates to This Post
11 January 2020 — minor edits to address a technical difficulty and to help people find the petition form