Who keeps our genomic data?

Now For Sale at Firehouse Prices: Thousands of People’s Genomes
[Via Discover Magazine]

DeCode Genetics, a genome sequencing and drug development company, found out the hard way that predicting disease risk simply by reading someone’s genes isn’t so straightforward. On Tuesday, deCode filed for chapter 11 bankruptcy protection in Delaware. The company’s financial problems have also raised some troubling questions about genetic privacy.

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I don’t worry so much about privacy. I think there are legal ways to deal with hits. I’m more concerned with what happens to our digital medical data. As we enter the digital age for medicine and as our genome gets put into large databases, who will be responsible for maintaining those databases?

If it is a commercial entity, what happens if they go bankrupt? Will there be an effective monopoly or will there be many such digital providers? Will it be more like a utility than a for-profit corporation? Who will regulate them?

These are somer really important questions that should be answered very carefully. Because even if privacy is maintained, it does no good if the company goes dark.