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by jackcosgrove 3696 days ago
The About page says, "The 1000 Genomes Project developed guidelines on ethical considerations for investigators doing sampling, outlined in the Informed Consent Background Document and the Informed Consent Form Template. All collections included in the Project followed these ethical guidelines and model informed consent language."

Here is the consent template: http://www.1000genomes.org/sites/1000genomes.org/files/docs/...

The post I responded to sounded like the genomic data would be uploaded without consent to a giant public database.

Even with consent the greater concern is that employers, medical providers, national health services, and health insurance companies could, by sequencing part of your genome, match it to a public database identifying you and your entire genome. This could then be used to raise prices, deny health care, or deny employment.

De-identification is not enough if the material is indicative enough that efforts to re-identify it can succeed.

Kudos to those advancing science by making their genomes public, but it's a risk I would not take.

1 comments

Except it is illegal for employers and insurance companies to do such discriminatory practices.

With new technology comes new responsibility - we shouldn't shy away from the tech because we don't want the burden of enforcing regulation.