Sunday, November 22, 2009

Government Regulation of Direct to Consumer Genetic Testing

The Privatization of Genetic Data

The US government has done a decent job funding genetic research and creating an infrastructure for scientists to research genomes. Now what’s needed is funding and policy to facilitate the privatization of genetic data.

Current debate on personal genomics has focused heavily on the need to protect consumers from direct to consumer genetic testing companies. Although on the surface this seems a legitimate concern it’s really a secondary debate. The first issue is whether or not the US government will recognize personal genetic information as the private property of the individual. The issues of rights and responsibilities regarding the use, interpretation, and financial gains/losses regarding personal genetic data stem from the initial determination of ownership.

If the US government forces personal genetic data into a person's medical records to “protect” consumers….then they've effectively given away the individuals rights to their DNA to their health provider and insurance company. To say the individuals right to genetic privacy can be negated because of a lack of infrastructure for managing the flow of information regarding the interpretation of personal genetic data is short sighted. Issues of security, methods and processes for assessing the interpretation of genetic data as well as who’s qualified to transmit and receive information can be mitigated. What’s needed is a government investment in public policy and the infrastructure necessary to facilitate the privatization of genetic data. More of what that may look like later….

The government’s primary role is to identify legal ownership of genetic data – and then protect it as private property. Hopefully the privatization of genetic data in the US will results in my genetic data being treated as my private property. Otherwise… I’ll just put my genetic data on a server outside the US.

Good luck to us all.

Alice Rathjen
DNA Guide
DNA Classifieds

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