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

Death by stoning

[Anonymous Coward]

Among other things, next-generation DNA sequencing is the ultimate paternity test. There's enough information to determine a person's entire family tree out to many generations. But there are still countries where adultery is punished severely (e.g. death by stoning). I'm a big believer in allowing people to get their genomes sequenced and to freely share information that would allow them to interpret their genomes (i.e. freedom of speech). But those of us who have grown up in modern "western" cultures are going to have to understand that there are other cultures that do things very differently.

So disappointed

[persicom]

Where's The Double Helix roller coaster?

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.

Re:No way I'd agree to give away private data

[Anonymous Coward]

- We are very grateful that you chose our company to work as a umm.. Systems Engineer...
- Yeah I've always wanted to work on Linux for a living.
- ... however our genetics background check indicates that all your male paternal family members have the psychopath gene. With you being of sex.... umm.. male we fear that there is a good chance that your genetics could affect our performance as a group.
- Sigh. Do you have any openings in management?

Re:No way I'd agree to give away private data

[Anonymous Coward]

But imagine someone near death. The privacy issues wouldn't be so pronounced in that case. It would be kind of like saying you want to posthumously donate your organs.

Or heck if it were possible to sequence people who are already dead, someone could just save us all the trouble and dig up some old graves of people who died before mickey mouse. That stuff has got to already be public domain.

Re:No way I'd agree to give away private data

[drinkypoo]

In one sense this would mean a DRASTIC change in the way people take care of themselves, since individual accountability would bear the true cost of medical insurance.

Oh, you mean original sin? Or perhaps the sins of the father? Because your parents' activities throughout their lifetime affects the genetic material they pass along to you.

They can have mine

[behrooz0az]

They can get my DNA from my cold, dead hands.
Very seriously, They can take it when I'm dead. Privacy won't matter to me then and the data is still useful for them. probably even more useful because they now have a cause of death which means more data.
They should really consider this. Probably some sign-up process like they do for organ donors.