Should researchers control the use of everyone’s genomes?
It’s time for a national debate about when and how our genetic information should be used. The healthcare industry and government are planning that our genomes will soon be part of our electronic health records, so that sensitive data can be used without patient consent. The cost of sequencing a genome will soon drop below $1,000.
But the debate about who should control the use of this unique, personal information must be informed by knowing/tracking the hidden flows of genetic data.
The next phase of theDataMap should track the use, sale, and disclosure of genetic information: from hospitals, labs, and genomic sequencing companies to private biobanks, etc, etc.
We cannot weigh risks vs. benefits of open access to genetic data when the risks are unknown.