One of the more recent major government investments in the genetic information marketplace is the $25 million grant awarded to Kaiser and UCSF http://bit.ly/735YKt . In this model individuals altruistically donate their DNA to Kaiser and have it mined with their medical records. As a non-profit with an excellent reputation for providing quality care... Kaiser is a good steward for this type of study. However, as far as I can tell, Kaiser and UCSF appear to have all rights to monetize the data with no information transparency to either participants or researchers outside of Kaiser and UCSF.
In our current genetic information marketplace US taxpayers pay for genetic research with often private entities retaining most all the economic rights associated with the data. This model has its place as a form of government subsidy of industry … but do we really want this to be the dominant genetic research model moving forward?
What the heck… why not have the government subsidize direct to consumer genome services instead? Then patient advocacy groups could organize around populations to facilitate genetic research and the “patents” around genetic interpretation could then be owned in part by those non-profits which serve the population most impacted by a particular disease. Wouldn’t this model result in lower overall costs for both personal genetic information and health care in the long run?
Another model would be for consumers to pay upfront for their raw genetic data, manage it separate from their medical records and be compensated for sharing in the risks associated with developing genetic research http://www.dnaguide.com , http://www.dnaclassifieds.com . Such a model might seem out of control but in fact it’s more consistent with an actual genetic information marketplace.
Perhaps all the arm waving regarding direct to consumer genetic testing has more to do with the fight over how genetic information will be subsidized and monetized rather than genuine concern over actually protecting consumers and their genetic information.
CEO, Founder DNA Guide and DNA Classifieds