The new kid on the block
There’s a new place to play with our DNA results right now.
It’s called DNA.Land, it’s at https://dna.land/ — and that’s a complete address, no dot com or dot org involved, and it’s not a testing company but rather a new site where we can upload our DNA results from the testing companies to get more information.
DNA.Land describes itself as:
a place where you can learn more about your genome while enabling scientists like us to make new discoveries for the benefit of humanity. The website is not-for-profit and run by the Erlich and Pickrell labs affiliated with Columbia University and the New York Genome Center. The purpose of DNA.Land is to enable you to learn more about your DNA and allow you the autonomy to share your data to facilitate important scientific research at the forefront of genome sciences and medicine. Our goal is to help members interpret their data and connect potential participants with research studies.1
The website is strictly in beta right now — which means things will change a lot as more samples are uploaded and more information and tools become available.
The one thing that isn’t likely to change even in the slightest: like every other place where we might choose to use the tools to review our DNA results — it has rules.
Now there isn’t anything at all wrong with rules. To the contrary, every website that deals with our DNA should have rules. The rules should tell us first and foremost what we have to do when we play in a website’s playground, and they should tell us what we’re giving up in terms of personal privacy as well.
And there’s nothing wrong with any particular rule at any of the DNA websites. As long as the policy is clear, and it comports with the ethical standards we expect in genetic genealogy, and we have a reasonable chance to understand what we’re being asked, it’s fine. If a website wants to take The Legal Genealogist‘s DNA and combine it with that of a rhesus monkey to see if they can improve on my family tree, as long as the rule is clear and I agree to it, there’s no problem.2
So how do the rules of DNA.Land stack up?
Just fine, actually.
First, the privacy promises:
we pledge the following guidelines that in our perspective will lessen most of the risks while maximizing your impact on scientific studies:
• By default, we will not share the following with third parties before obtaining your explicit permission: the personal identifiers in your profile, your contact information, your individual-level survey results, or your individual-level genomic data.
• If you do decide to connect your social media profiles with DNA.Land, we will never share your genomic data or survey data with any of the social media websites.
• To facilitate cutting edge research, by default, we will only share with other researchers or publish aggregated data. For example, we will mix your genomic information with a large number of genomes before sharing and only share the average allele frequencies with other researchers. We will follow the best practices and tools developed according to the “Framework for Responsible Sharing of Genomic and Health-Related Data” of the Global Alliance for Genomics and Health of the National Institutes of Health.
• We may release your information if required to do so by law, or if such action is necessary to comply with state or federal laws or respond to a court order, subpoena, law enforcement or regulatory request, or search warrant.3
And, the site honestly warns: “we will do our best to protect the information you provide to us. Despite our efforts, we cannot guarantee that your identity and/or data will never become known, which could have significant implications in some scenarios. We estimate that the risk for such a confidentality breach is low but not zero.”4
Although you’re going to want to click through to the best practices and tools referenced to read for yourself, in general these conform to the essential element of Genetic Genealogy Standards, the new code of ethics for genetic genealogists.
The site also outlines, in plain English, what DNA.Land expects of us: “You agree not to use DNA.Land to promote hate, discrimination, or violence towards groups or individuals based on race, ethnicity, religion, sexual preference, gender, age, health data, income, or family heritage or to use DNA.Land for any illegal activity. We reserve the right to delete user profiles, data and user access at our discretion.”5
Why might we consider doing this? Well, we will get “information about your ancestry, traits, and relatedness with other individuals”6 — that is, ethnicity estimates and matching with others who upload their data. And, from the standpoint of DNA.Land:
By being part of DNA.Land, you will be able to connect with the scientific community and learn more about your genome for free. Genetic research is important for understanding human heritage, health, and well-being. Thanks to people like you, our labs were able to solve the genetic basis of three devastating pediatric diseases ( 1, 2, 3 ), reveal the shared genetic origin of multiple diseases such as Parkinson’s disease and schizophrenia, and understand how humans evolved.7
Though there’s no way to unshare information that has been shared, the site does let you back out if you want to: “If you do decide to participate, you are free to withdraw your consent and to discontinue participation at any time, no questions asked. Your participation is entirely voluntary.”8
How much benefit will we get from this site? We’ll just have to see. But from the standpoint of the rules of the road, there’s no reason not to consider playing in the DNA.Land playground.