Scientists Hope To Attract Millions To "DNA.LAND" (nature.com)

An anonymous reader writes: Started by computational geneticist Yaniv Erlich, and geneticist Joseph Pickrell at the New York Genome Center and Columbia University in New York, DNA.Land is a project which hopes to create a crowdsourced DNA database for genetic studies. Nature reports: "The project, DNA.LAND, aims to entice people who have already had their genomes analyzed by consumer genetics companies to share that data, allowing DNA.LAND geneticists to study the information. Although some consumer genetic-testing companies share data with researchers, they provide only aggregate information about their customers, not individual genomes. Because the data are not always accompanied by detailed information on patients' health, they are of limited use for drawing links between genes and disease."

Comments

No way I'd agree to give away private data

[Rainbow Nerds]

I read the Nature article and, frankly, it's very troubling.

Erlich has studied the potential for unmasking the identities of anonymous donors of genetic data, and the study's consent document warns participants that “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 confidentiality breach is low but not zero.” Erlich and Pickrell have adopted what they call a “skin in the game” philosophy by making their own genomes publicly available.

"Usually, genomics studies suggest discussing your decision to participate with close family members," Meyer says. "Here, genomic data is combined with parents' names and dates of birth, both identifiers, so it was surprising that there was no mention of risks to family members."

My DNA is unique to me, so there really is no anonymity to begin with. It's just not linked to my name, address, SSN, etc. This information would be a gold mine to insurance companies, doctors, pharmaceutical companies, and perhaps potential employers. There's so much potential for abuse and so little security involved. Furthermore, it doesn't seem like relatives have the option to opt out from being referenced here, which means my privacy might be at risk without my consent. Sure, it won't include my own DNA, but it's still a huge risk.

I understand the scientific value of such a data set, but there's just way too much risk involved.